China has more than 100,000 autistic children: expert
People's Daily (China)
December 07, 2006
China has at least 100,000 autistic children but there is a lack of
adequate professional treatment available, an expert said Thursday.
"According to the statistics from the second China National Sample
Survey on Disability, there are 100,000 autistic children in China.
But the real number is much bigger than that," said an official
surnamed Li with the Beijing Rehabilitation Association for Autistic
Children (BRAAC).
"Beijing alone has about 80,000 autistic children," Li said.
A report by China Central Television (CCTV) said China has at least
1.8 million people, including 400,000 children, suffering from
autism.
Autism is a mental disorder that makes it very difficult for people
to communicate properly, or to form relationship with others. It
accounts for a hefty proportion of mental disability among children,
but its cause is a mystery. Some scientists believe it is genetic,
while others say it could be environmental.
Doctors say children with autism should receive treatment between
the ages of two and 12. With proper treatment at the right time, 20
to 30 percent of sufferers will learn to be independent adults.
However, there are only a few institutions in the country with
adequate funding to give special treatment to autistic children,
and "a lot of autistic children miss prime opportunities for
treatment because of inadequate institutions and funds", according
to Jia Meixiang, deputy chairman of BRAAC.
"The burden falls almost completely on the shoulders of the
patients, and some parents have to fund rehabilitation centers
themselves," said Jia, quoting Wang Guoqiang, father of a autistic
child, who has donated 100,000 yuan each year since 2005 to BRAAC to
sponsor poor families with autistic children.
Autism patients are not covered by Chinese law on the Protection of
the Handicapped.
Earlier reports suggest that China is making efforts to improve the
situation of autistic patients. Vice Premier Zeng Peiyan called on
the public to care more for children suffering from autism at a
charity function to raise funds for the disabled on Dec. 1.
The China Welfare Fund for the Handicapped also pledged to set up a
special fund to support research into autism and establish
rehabilitation organizations for children.
December 7, 2006
Autism in China
Injecting Sense in to CAA
Wade Rankin has a good commentary and expounds on Rep. Burton's reaction to CAA:
...Like some of our friends in various organizations that maintained their support of the CAA, Rep. Burton feels this flawed bill is better than none. I respectfully disagree with the distinguished gentleman, but I agree with his major point: this country’s vaccine policy ? and perhaps the nation’s health-care policy as a whole? will not be deemed trustworthy unless all plausible hypotheses are examined...
Read the whole thing.
...Like some of our friends in various organizations that maintained their support of the CAA, Rep. Burton feels this flawed bill is better than none. I respectfully disagree with the distinguished gentleman, but I agree with his major point: this country’s vaccine policy ? and perhaps the nation’s health-care policy as a whole? will not be deemed trustworthy unless all plausible hypotheses are examined...
Read the whole thing.
Outing the Gay Republicans of Autism?
John Gilmore of A-CHAMP asks the question, should high profile closet DAN! families be outed?
Update:
I have been thinkin' a little about this and here are my initial thoughts.
I am thinking there are two different ethical scenarios. Because we are talking about children's medical information, I think that we need to be sure we don't step on children's rights.
I am thinking if a parent tells someone in confidence about their child's treatment, and asks that you keep it private, regardless of their public stance, you should not break that trust, unless there is some sort of mistreatment of a specific child going on.
However,
If you see a parent in a waiting room, I think that asking the question, "Why are you not preaching what you practice", is legit. I think that question should be asked in private first to give them the chance to really do some self-examination about the impact of their decision to with hold vital information from other parents who are looking to them as leaders for some direction as to what they should do for their own child.
But if they are given that opportunity and sufficient time to really come around, then I don't think I could condemn anyone who 'outed' them.
I think about this in the context of my own blogging. Now head of a multi-million dollar autism organization I ain't, but I have put myself (and my child to some extent) out in public. I have made myself a public figure (in the legal sense) by blogging. If I am unwilling to open myself up to scrutiny on the issues that I bring to the table, then I have no integrity.
If I encourage parents to look in one direction for treatment while I am pursuing another for my child, then shame on me.
...your thoughts?
I imagine everybody knows about the problem of the gay Republican politician. There are lots gay Republican politicians, but to be a good Republican these days you have to denounce anything that smacks of homosexuality. This, of course, leads to all kinds of hypocrisy. The gay community is divided about whether these people should be outed or not.
We have a similar problem in the autism movement, and those are the leaders of large autism organizations who refuse to acknowledge that there is an epidemic, refuse to spend any of the money that they have extracted from this community on anything related to vaccine safety issues, mercury or any of the methodologies being investigated by DAN and related researchers.
But at the same time they are taking their own affected children to DAN doctors, chelating their kids, getting them scoped by Wakefield or Krigsman, and refusing vaccines for their children. Are they liars? Are they hypocrites? Are they the people who will get us to where we need to go? And what should be done by the rest of us with our own "gay Republicans." Should we ask them to explain themselves? Is the discrepancy between their public actions and statements and their private actions anybody else's business. Are we not allowed to ask them what they are doing in Arthur Krigsman's waiting room when their organizations won't even acknowledge that GI issues are part of autism. Are we being complicit in hypocrisy by remaining silent?
Update:
I have been thinkin' a little about this and here are my initial thoughts.
I am thinking there are two different ethical scenarios. Because we are talking about children's medical information, I think that we need to be sure we don't step on children's rights.
I am thinking if a parent tells someone in confidence about their child's treatment, and asks that you keep it private, regardless of their public stance, you should not break that trust, unless there is some sort of mistreatment of a specific child going on.
However,
If you see a parent in a waiting room, I think that asking the question, "Why are you not preaching what you practice", is legit. I think that question should be asked in private first to give them the chance to really do some self-examination about the impact of their decision to with hold vital information from other parents who are looking to them as leaders for some direction as to what they should do for their own child.
But if they are given that opportunity and sufficient time to really come around, then I don't think I could condemn anyone who 'outed' them.
I think about this in the context of my own blogging. Now head of a multi-million dollar autism organization I ain't, but I have put myself (and my child to some extent) out in public. I have made myself a public figure (in the legal sense) by blogging. If I am unwilling to open myself up to scrutiny on the issues that I bring to the table, then I have no integrity.
If I encourage parents to look in one direction for treatment while I am pursuing another for my child, then shame on me.
...your thoughts?
December 6, 2006
CAA Pases
My reaction goes back and forth between "Yawn... Not gonna make a difference or have much impact", to "well maybe with $945 million in play some will accidently go to reasearch that will actually help my child and prevent more kids from getting sick".
Yes I have grown a bit cynical when it comes to government funded research.
NAA and SafeMinds are more optomistic.
From NAA and SafeMinds
Yes I have grown a bit cynical when it comes to government funded research.
NAA and SafeMinds are more optomistic.
From NAA and SafeMinds
Combating Autism Act Passes in the House
We’re pleased to announce the passage of the Combating Autism Act, approved earlier today by a House vote of 2/3's majority. The next step for the CAA is back to the Senate for deliberations on the House-approved version of the bill. We don’t anticipate problems there, but will be watching the discussions closely.
The main goal of NAA and SafeMinds in staying engaged in the legislative process was to obtain a directive for investigation of environmental factors, including vaccines and their preservatives, in the development of autism. Having achieved that goal, the next phase of securing appropriations for the bill will be difficult given the intense competition for funding. The war continues to deplete our nation’s financial resources, with current costs at approximately $5 billion a week according to government contacts.
As long as the legislative path for this bill seems already, it is clear that much work lies ahead in ensuring that the authorization for environmental research is appropriately funded. We will need the assistance of all who believe as we do that this area must be pursued if our kids are going to get the help they need. Soon, NAA and SM will be sending out action alerts on how the community can help us in our campaign with the Appropriations Committee.
With the passage of the CAA, we now have federal legislation that acknowledges the urgency of addressing the health care crisis of autism, the need for intensification and expansion of research into treatments and a cure (most importantly, the investigation of environmental factors relative to autism) and the need for community oversight among these critical research areas. We see this as a landmark event for our loved ones.
We thank everyone who has stood with us during this process. Parents, family members, and friends were instrumental in answering our action alerts by keeping up the pressure with their phone calls and letters to include the environmental provisions, treatment options, and critical oversight language. We are convinced that these collective efforts will make a positive difference for all children diagnosed with autism. Also, our heartfelt thanks go to Don and Deirdre Imus who steadfastly remained at the table on behalf of our kids, even without having a “dog in this fight”, as Mr. Imus would say. This is not an easy cause to champion, and we are heartened by their courage and devotion in doing the right thing for our children. By lending their support, they gave all of our children voices. We will be forever grateful.
National Autism Association
SafeMinds
December 4, 2006
Call to Barton to Restore Environmental Funding to CAA
December 1, 2006
The Honorable Joe Barton
2109 Rayburn House Office Building
Washington, D.C. 20515-4306
By FAX: 202-225-3052
Re: Restoration of vaccine and environmental research to the Combating Autism Act
Dear Chairman Barton,
In 2005 Senators Santorum and Dodd requested the diversity of groups that represent the autism community to work together to help draft the language that became the Combating Autism Act. After much toil and deliberation a draft that reflected the consensus of the autism community emerged. This draft had nearly universal support in the autism community.
The consensus bill included statutory language requiring research on the possible association between vaccines and autism, and statutory language requiring research on possible environmental factors in causing autism. For many individuals and organizations within the autism community these were the most important provisions in the bill.
As you know, the final version of S. 843 that was voted on and passed by the Senate did not include the statutory language for vaccine research. We are concerned that the statutory language requiring environmental research may not be included in the final version of the bill that may be voted upon by the House of Representatives.
We urge you to restore the statutory provisions for vaccine and environmental research to,H.R. 2421, the Combating Autism Act, as originally conceived in the consensus bill. Restoring these key elements would assure the support for this legislation by a large section of the autism community who believe that this research will be key to the eventual discovery of the causes of autism, the development of safe and effective treatments, and ultimately finding a cure for autism.
Respectfully,
Advocates for Children's Health Affected by Mercury,Poisoning – A–CHAMP
Adventures in Autism, California
Alan D. Clark, M.D. Memorial Research Fund, Missouri
Angels Wings for Autism, New York
Approaching Autism with Advocacy, Recovery & Education, Vermont
Autism and Vaccination, Pennsylvania
Autism Healing Network, Washington
Autism in Nebraska, Nebraska
Autism Recovery Network, Florida
Autism Recovery Resources of Washington
Autism Solution Center, Tennessee
Autism Support Daily Vermont
AutismFacts.com, Pennsylvania
Biological Education for Autism Treatments, Iowa
Biological Education for Autism Treatments, Minnesota
Brenen Hornstein Autism Research and Education Foundation, Illinois
Coalition for Mercury Free Nebraska, Nebraska
Coalition for Mercury-Free Drugs, Virginia
DAVID&SAM, Maryland
Dental Amalgam Mercury Syndrome, Inc., Minnesota
Developmental Delay Resources, Pennsylvania
FAIR Autism Media, Illinois
Foundation for Mercury-Injured Children, Missouri
Heal Autism Now Delaware, Delaware
Healing Every Autistic Life Foundation, Florida
International Hyperbaric Medicine Association, New Mexico
Moms Against Mercury, North Carolina
National Autism Association, Long Island New York
National Autism Association, New York City New York
National Autism Association, Ohio
National Autism Recovery Foundation, Missouri
No Mercury, Missouri
North East Louisiana Chapter, Autism Society of America, Louisiana
Parents for Autism Autoimmune and Vaccine Education, New Jersey
Patient Resource Center, Maryland
Research, Education, and Action for Autism Spectrum Children, Massachusetts
Schafer Autism Report, California
Tennesseeans for Safer Vaccines, Tennessee
The Age of Autism: What Newsweek Missed
The Age of Autism: What Newsweek missed
By DAN OLMSTED
UPI Senior Editor
WASHINGTON, Nov. 20 (UPI) -- Newsweek's cover story this week is about what happens to autistic kids when they grow up. The magazine does a good job of pointing to funding gaps and the plight of parents who can only imagine what will happen to their kids after they're gone.
But Newsweek fails to confront a key issue, one that bedevils mainstream publications every time they write about autism: Is it really increasing? Or are we just doing a better job of diagnosing the disorder?
Newsweek, without exactly saying it, comes down on the side of better diagnosis. " ... (M)ore sophisticated epidemiology has revealed the true magnitude of the problem," the magazine says. It also suggests the increase coincided with parents banding together "to raise awareness of a once rarely diagnosed, often overlooked disease."
Yet in a sidebar, Thomas Insel, director of the National Institute of Mental Health, says that as a psychiatrist in the 1970s he never saw a single person with autism. "In 1985, curiosity sent him searching; it took several phone calls to find a single patient," the article says.
Does today's "more sophisticated epidemiology" really square with Insel's experience? I don't believe it does; 1985 was hardly the dark ages of medical diagnosis. And autism was described as a distinct disorder more than 40 years before that -- concern already had arisen that it was becoming a trendy diagnosis, handed out too freely.
Yet Insel, obviously well-connected to the medical and psychiatric community, had to mount a virtual search party to find a single one?
The article goes on to say that NIMH is "newly interested in environmental factors that might set off the disorder in patients who are already genetically prone to it."
What does it mean to be "already genetically prone" to autism, yet have it triggered only after exposure to some outside factor? I'm not sure that makes sense. What does make sense is that some children might have a genetic inability to cope with that factor, triggering the "environmental insult" that leads to autism.
If such an exposure increased, it could certainly account for an increase in the autism rate. NIH officials are increasingly blunt about this, even if the media are not. At a recent meeting with a group of parents, according to several participants, the head of one NIH institute said: "There are no epidemic deniers here."
I'm told a second institute director said at another recent meeting that autism is primarily an "environmental" disease. An audience member's suggestion that genes alone explain the current rate was flatly dismissed by this official.
Because it doesn't connect the dots, Newsweek misses the point: We're in an epidemic, which is why the future of this generation is a crisis. The article's whole premise, however, inadvertently suggests the truth: There are now so many kids with autism -- "as many as 500,000 Americans under 21," the magazine says -- that caring for them as adults must be urgently addressed.
If there were already a comparable million-plus adults with the disorder, the issue would have been recognized years ago. To be sure, some autistic adults of all ages have been misdiagnosed over the years as retarded or mentally ill.
But if autism has held steady over the years, it shouldn't be hard to find thousands and thousands of clearly autistic people in their 30s, 40s, 50s -- even their 80s and 90s. The first child in the landmark 1943 study identifying autism, who was known as Donald T., is still alive at age 73. It was the striking uniqueness and novelty of such cases that prompted the study in the first place.
When NIMH's Insel went looking for cases in the 1980s, it seems autism was still pretty rare. It's not anymore -- as Newsweek points out, disorders on the autism "spectrum" now afflict as many as 1 in 166 children. Note: children. Where are the 1 in 166 autistic adults?
Until we stop ignoring the obvious, we're never going to stop this epidemic -- and find new and better treatments for people already afflicted.
And that's the most urgent issue of all.
December 3, 2006
Autism One Radio: December Schedule
December Debuts and coming attractions on Autism One Radio
www.autismone.org/radio
Tuesday, December 5th at 4:00pm ET
Debut:
Judith Bluestone: The Fabric of Autism: Weaving the Threads into a Cogent Theory
In this dynamic multipart series we join Judith Bluestone to gain clarity through her gift of simplifying the many interrelated and often misinterpreted aspects of the Autism Spectrum. Judith, the renowned developer of the HANDLE approach and host Christopher De Michele, along with a cadre of practitioners, educators, parents, guardians, celebrity guests, and audience participants share and discover the foundations, evolutions, and case studies of HANDLE that breed hope through proven results. This is a cumulative and sequential series wherein you will learn of solutions focused on relieving the causes of ASD, not merely modifying behaviors. Join us for insights that untangle and re-weave the “The Fabric of Autism”.
Tuesday December 5th at 2:30pm ET
En Francais:
L'Autisme Vu au Quotidien avec Chantal Sicile-Kira
Topic: Conference Internationale Biomedicale et ABA a Paris (International Biomedical and ABA Conference in France)
Guest: Dr. Corinne Skorupka, Presidente fondatrice de l'association Ariane.
This is a major conference in France that covers both Biomedical and Verbal Behavior approaches to autism, the speakers for which includes:
Martine Ferguson; Dr. Diane Lynch Fraser; Boyd Haley, PHD; Robert Nataf, MD; James Neubrander, MD; Corinne Skorupka, MD; & Anju Usman, MD.
Thursday, December 7th at 2:00pm ET
Debut:
George Saidah and Amber Burton Small: Heart of Sailing
This program offers information about Heart of Sailing’s recreational therapy programs, including free weekly Daysails in various regions across the US. The program will focus on success stories and participants’ interviews, as well as other information and research about the therapeutic benefits of sailing for children with autism and other special needs. Interviews of participants and volunteers will provide more detailed information about therapeutic aspects including socialization, communication, teamwork, motor skills, and confidence building. The program will also serve as a travelogue by providing brief summaries of interesting cultural, social, and historical facts of the various Daysail regions. It will serve as a forum to connect parents and caregivers seeking alternative forms of therapy. Different regions will be highlighted, and the program will be offered in 4 different languages.
Saturday, December 9th at 12:00 noon ET
Dan Coulter: Life in the Asperger Lane
Guest: Brian King, a licensed clinical social worker who coaches and counsels people with Asperger Syndrome, along with family and others. Brian and one of his sons have been diagnosed with AS.
Tuesday, December 12th at 1:30 pm ET
The Real World of Autism With Chantal Sicile-Kira
Topic: Assistance Dogs for Children and Teens with Autism.
Guest: Patty Dobbs Gross, Executive Director of North Star Foundation.
Friday, December 15th at 12:00 noon ET
In Arabic:
Dr. Hosam Badr: The Autism Arabic Café
Dedicated to the Spirit of Dr. Rimland: Dr. Badr speaks about Dr. Rimland and his role as the father of the biomedical treatment of autism.
Sunday, December 17th at 1:00 pm ET
Susanna Moses: Hand in Hand
Guest: Shirley Levi, visionary, artist, singer, songwriter & autism advocate
Monday, December 18th at 12:00 noon ET
Special presentation:
Robert and Sandy Waters: The Candy Store
Guest: Brian Ray, guitarist for Paul McCartney
Sunday, December 24th at 1:00 pm ET
en Español
Susanna Moses: Mano en Mano
Guest: Shirley Levi, visionary, artist, singer, songwriter & autism advocate
Monday, December 25th at 10:00 am ET
Christmas Special
Robert and Sandy Waters: The Candy Store
Guest: Dr. Elmo of the hit song “Grandma Got Run Over By a Reindeer”
Debut:
(date to be announced)
Tami Duncan : The Lyme and Autism Connection
With autism numbers at such a high level, the amount of children infected with Lyme disease parallels this epidemic. It is estimated that up to 90% of children with autism also are infected with Lyme disease. The International Lyme and Associated Disease Society states that Autism and ADHD is one of the disorders that Lyme Disease can mimic. The symptoms of Lyme Disease are the same as those of autism. The Lyme and Autism Connection will explore testing, treatment options and how we can help our children begin to heal.
December 2, 2006
Recovering Children on the Cutting Room Floor
Over the last two years I have heard this story told over and over again by parents. Interviewed by the media about the improvements their children have made using DAN! treatments, but the real story never makes it on the air.
I thought I would share one of these stories.
From Kendra Pettengill:
I thought I would share one of these stories.
From Kendra Pettengill:
I just learned a very tough lesson.
When my daughter Keely and I were invited to the DAN conference I also got a call from a TV reporter. He was asked to do a story on Autism by his station, and it was to be big, several minutes worth on two consecutive nights. He wanted to highlight Keely and I and our success story.
He admitted to me he knew nothing about Autism. I sent him a 12 point paper pointing out what I feel are the 12 biggest issues in Autism. I told him straight up that his bosses would never allow him to tell the real story, and the last reporter that did in Texas lost her job. He assured me that they were family owned and he could do any story. I told him that he might be able to tell one of the twelve points, or maybe weave in two of them, but no more than that or it would be confusing, watered down, and wouldn't make the point.
He and a camera man came and spent an entire Saturday at our house. We poured our hearts out to him. I told them every detail of getting the diagnosis, her horrible symptoms, and the prediction of her ending in an institution by the age of 12 or 13. I talked abou how abandoned families are, that no treatments are offered here in Oregon and how we had to go it alone, with help from family only. I told him all about DAN and Keely's horrendous reactions to her vaccines, her near death and then Autism. How we started the GFCF diet and within two weeks she started talking. We then started her ABA program and progress exploded. And he met her, and interviewed her. Both he and the camera man seemed not just shocked by her condition and abilities but she charmed the hell out of them. She was, I can assure you on her A game. I gave them before and after videos as well as her diagnosis including graphic descriptions of her worst behaviors observed during diagnosis.
Dr. Rimland had sent a message that he would do a phone interview with the reporter. The reporter never followed up on that offer, missing a huge opportunity. But the story just aired Wednesday and Thursday nights and Keely and I were not included at all. The reporter apparently ran into the ND crowd in Eugene and gave two nights of fluff stories with people only mildly affected. Despite weeks of advertising this huge piece and two part series titled "THE AUTISM EXPLOSION", the epidemic and xplosion were never even mentioned. Causes, treatment, and especially recovery were not mentioned.
We were sold down the river. He didn't even have the journalistic integrity to tell me we were being left out of the story. Hundreds of people were waiting to see it. I am devastated, but I should have known better. You would not have known what the face of Autism looks like from this fluff. The worst journalism I have seen yet. I have written over 10 letters that friends and family and autism families are sending to KEZI as I cannot send them all in my name.
Keely has worked so hard, she is mainstreamed now in third grade, 100% independent, no pullouts, no aide, making Straight A's. I am so proud of her and how very far she has come. She deserved to be recognized and to help give families hope that recovery is possible and that there are treatments that can make a difference in the outcome of these kids. I cannot believe how ticked off I am.
Here is the information on the station reporter and the two pieces he did.
http://www.kezi.com/content/contentID/15480 (Part 1)
http://www.kezi.com/content/contentID/15492 (Part 2)
KEZI 9 News - Tristan Mcallister
He didn't say anything about Autism. They advertised constantly with this ominous music, "Tune in for our two part special, The Autism Explosion why the huge numbers in Oregon" and then never addressed it. They didn't even say what the numbers are, didn't as why. Just advertised that was the story, then showed two semi-interesting human interest stories.
I found out that he met up with the woman in the first part who is friends with the woman in the 2nd part. Her name is Nan Lester and to many of us in Oregon she is public enemy #1. She is pretty much in the ND camp. She has dictated policy to the local school district and other families are left to live with her view of things or go elsewhere. She interjects herself into anything Autism related in Eugene. She interrupts parents at school meetings and then smooths the ruffled feathers of school officials and tells them that a great job they are doing. I know families in Eugene homeschooling rather than subject their child to the Eugene programs dictated by Nan Lester. [ed. note - in a later email Ms. Pettingill reiterated her opinion of Ms. Lester, but says that her comment that she was public enemy number one, "might have been a little strong".]
The kids in this epidemic are not going to teach art classes or get a drivers license, or get married, nor does anyone have hopes of them being a Senator or President. They put forth a very narrow view of Autism, gave as my own mother said, "Zero information about anything to do with Autism", and left our story of overcoming all the odds and diversity, struggling as a single parent to provide programs for my daughter and having enormous success through biomedical, chelation, and ABA to where we are today, they left our story on the cutting room floor. Hundreds of people were watching to see how they would present Keely and I, and he completely left us out. Apparently causes, treatments, and potential recovery are just too controversial, but fluff is ok.
What a story of hope we could have been to parents not knowing what to do.
If anyone on this list wants to send a little note, send it to kezi@kezi.com.
Thanks everyone
Kendra
December 1, 2006
Online Confrence on Oxalates
OXALATES CONTROL IS A MAJOR NEW FACTOR IN AUTISM THERAPY!
Good day from The Great Plains Laboratory in Lenexa, KS! We are happy to announce that Dr. William Shaw has recently completed new research on the role of Oxalates in Autism. This research has been summarized in an article available on our website at http://www.greatplainslaboratory.com/oxalates/OXAL-web/GPL-OXLS-1.htm.
This comprehensive article includes an explanation of how oxalates (derivatives of oxalic acid) are metabolized in the body and influenced by intestinal flora, toxic metals, the copper/zinc ratio, and pyridoxic acid levels. The article provides a list of dietary changes and treatments that will minimize absorption of oxalates from the gastrointestinal tract and the symptoms produced by high oxalates.
All of this information and MORE is available in the format of a FREE web conference with Dr. William Shaw on TUESDAY, DECEMBER 12 AT 6PM (CST)!
You MUST pre-register to participate in the FREE web conference. Please visit our website link at http://www.gpl4u.com/online-conference/online-conference.html to pre-register!
Good day from The Great Plains Laboratory in Lenexa, KS! We are happy to announce that Dr. William Shaw has recently completed new research on the role of Oxalates in Autism. This research has been summarized in an article available on our website at http://www.greatplainslaboratory.com/oxalates/OXAL-web/GPL-OXLS-1.htm.
This comprehensive article includes an explanation of how oxalates (derivatives of oxalic acid) are metabolized in the body and influenced by intestinal flora, toxic metals, the copper/zinc ratio, and pyridoxic acid levels. The article provides a list of dietary changes and treatments that will minimize absorption of oxalates from the gastrointestinal tract and the symptoms produced by high oxalates.
All of this information and MORE is available in the format of a FREE web conference with Dr. William Shaw on TUESDAY, DECEMBER 12 AT 6PM (CST)!
You MUST pre-register to participate in the FREE web conference. Please visit our website link at http://www.gpl4u.com/online-conference/online-conference.html to pre-register!
The Mercury Moms (and Dads) Head Back to Atlanta
From COMED/Mom's Against Mercury/ACHAMP/United Methodists Women:
We're Headed Back To Atlanta!
To Mark the 7 Year Anniversary of the CDC Simpsonwood Meetings, Moms Against Mercury and CoMeD, Ask You to Save the Dates of
June 7th & 8th, 2007!
On June 7th leaders of the Women's Division of the United Methodist Church, an organization a million strong, will gather the faith community at Simpsonwood, to redress the deeds done there, seven years ago. The two day event is known as, "The Truth Is Coming To Light".
In support of "The Truth Is Coming To Light" event, we will be holding the "Simpsonwood Remembered" Rally on June 8, 2007.
To read about the efforts of the United Methodists Women's Division to protect children from mercury containing vaccines, please go to
http://new.gbgm-umc.org/umw/ (scroll down)
Hang on.....more information and details will be available in February 2007 via SAR, EOH Yahoo Board, Moms Against Mercury email list and A-CHAMP email list.
Until then....just remember...save the dates June 7th and 8th!
PLEASE FORWARD THIS MESSAGE TO OTHER BOARDS
November 30, 2006
NAA and co. Write to Barton About CAA
Update on the Combating Autism Act – November 30, 2006
The following letter has been sent to Chairman Barton in an effort to reiterate the need for the mandate of specific environmental research in the Combating Autism Act.
November 29, 2006
The Honorable Joe Barton
2109 Rayburn House Office Building
Washington, D.C. 20515-4306
Re: Combating Autism Act: New Study Supports the Need for Urgent Action.
Dear Chairman Barton,
Thank you for your ongoing efforts to complete work on the Combating Autism Act before the end of the current session. Attached please find a pre-publication release from a group at University of Texas Southwestern Medical Center that supports the urgent need for a significant increase in funding for research on the role of environmental factors (including vaccines) in causing autism spectrum disorder (ASD): “Evidence of Toxicity, Oxidative Stress, and Neuronal Insult in Autism” (Journal of Toxicology and Environmental Health, Part B, 9:985-999 (2006)).
We ask that your bill include (1) a specific authorization to NIEHS (leaving centers a matter of discretion); (2) the Autism Advisory Board (to provide a more hands-on tool for community and researcher feedback and recommendations to ensure the most useful and strategic research), and (3) a subject matter mandate that research topics specifically include vaccines, other biologics, and their preservatives. These latter two items were addressed in the Senate report and colloquy but are of such importance that they should be included in the statute itself. We also urge adoption of the floor statement submitted on behalf of the community two weeks ago, a copy of which is also attached for your convenience.
S. 843 authorized $45 million over five years for Centers of Excellence in Environmental Health and Autism. The bill was the product of months of detailed negotiations and compromises involving dozens of organizations in the ASD community, federal agencies, and a lot of hard work by Senate staff. The specific authorization reflected the need for a significant increase in funding for environmental research for two simple reasons.
First, the nation is confronting with the leading edge of a costly and debilitating ASD epidemic (1:166 affected children). As with any epidemic, while there may be underlying genetic susceptibilities, there must be an environmental cause (virus, fungus, heavy metals, pollutants, etc.). Once the cause is discovered, immediate steps can be taken to prevent new cases and abate the epidemic.
Second, as is the case with lead poisoning, many cancers, and several other chronic disorders, knowledge of the environmental cause or triggers leads directly to effective treatments. These will provide those with ASD the best possible quality of life and the ability to make the greatest possible contributions to society.
Even with the more comprehensive list of subject matter topics for research focusing on the cause, prevention, and treatment for ASD which you have included in your draft, whether the research in fact gets done depends on the money actually spent. We recognize that as an authorizing bill this is just the first step, and that the ultimate research agenda depends on appropriations and discretionary decisions. However, clear Congressional direction at the authorizing stage will give the community an important tool, and Congress a point of reference for oversight, to work with the appropriations committees and the administration to implement the needed research agenda.
The federal officials most responsible for funding research into the cause and treatment for ASD provide the best – and frankly scariest – justification for a Congressionally mandated significant increase in funding, accountability, and oversight. CDC Director Dr. Gerberding was recently quoted in a November 22 UPI story (“Autism Picture Still Incomplete”): “We just simply don’t have answers to the cause of this disorder or the disorders that fall into the autism spectrum, . . . we don’t have a complete picture of the scope of the problem.” NIMH Director Insel was quoted in the same article: “We don’t really understand that whole landscape very well, . . . There's just a whole series of questions that we need to begin to define answers to much more precisely.” “Ironically,” Insel admitted, “this is such a high priority for the National Institutes of Health -- and we have a large hospital and a huge clinic, with 18,000 people here in Bethesda -- (but) there has not been an autism program here until now. . . . As it is, autism has arrived at the stage where polio stood in the mid-1950s.” Dr. Gerberding conceded in an earlier article (“Autism Research Stance Shifting?): “"When you're dealing with a problem as complicated as this one and as important to so many children and so many families across the United States, we have a responsibility to be open to any and all hypotheses.” Exactly so, but Congress must direct, appropriate, and oversee funding to make sure that no stone is left unturned.
Solutions to the many ASD puzzles must be based upon sound science. But the urgency of the need coupled with a lackluster track record of NIH discretionary decisions underfunding needed research in the past demands more active Congressional direction and oversight. We fully support your overall NIH initiative for improved transparency and accountability, and want these principles applied against the ASD epidemic immediately.
The enclosed critical review article, from Congressman Barton’s own district – the University of Texas Southwestern Medical Center, provides an excellent roadmap and summary of recent research, much of it privately funded, on the environmental causes and the various biological dysfunctions associated with ASD. The existence of an epidemic indicates environmental causation:
The increase in public awareness and broadening of the criteria may be possible contributing factors; however, the substantial increase in the rate of autism revealed by epidemiological studies and government reports implicates the importance of external or environmental factors that may be changing (USDE, 2003; Chakrabarti and Fombonne, 2001; Palmer et al., 2006).
Several environment-based mechanisms of causation are set forth:
Many theories were postulated regarding the underlying cause of autism. For example, autism was implicated to be related to the measles, mumps, and rubella vaccine (Wakefield et al., 1998, 2000; Wakefield, 2003); mercury in vaccines (Bernard et al., 2002; McGinnis, 2001); immune system dysfunction (Cohly and Panja, 2005; Warren et al., 1990, 1992, 1995; Singh et al., 1993; Weizman et al., 1982); fungal infection (Shaw et al., 1994; Shaw, 1996), toxicity (McFadden, 1996); metabolic abnormalities (Waring and Klovrza, 2000; Waring and O’Reilly, 1990; Alberti et al., 1999); and “leaky gut syndrome”(Vantrappen and Geboes, 1993). Most recently, studies have suggested that decreased glutathione levels and increased oxidative stress may play a role in the pathology (James et al., 2004). Which of the many theories may be correct and/or how the various theories may fit together remains unclear. It is important to note that these theories are based on small studies and much more research is needed.
But this orchard of low-hanging fruit will not get picked without a clear authorization from Congress.
The review cites several studies demonstrating that children with ASD have difficulty eliminating metals including mercury from vaccines and the environment. The review cites reports from the “real world” of families coping with ASD:
The Autism Research Institute collected data from over 22,300 parents of children with autism on the behavioral effects of biomedical interventions. The survey includes a list of 45 medications, 23 non-drug supplements or biomedical treatments, and 9 special diets. The parents were asked to rate the treatment on a 6-point scale. Of these 77 choices, parents rated chelation therapy (or the removal of heavy metals) as the highest. Seventy-six% of parents said that their child “got better” on this treatment. The next most effective treatment was a gluten and casein free diet at 65% (ARI, 2006).
Yet NIH has only recently announced but not yet begun a clinical trial of chelation that has been used by the few families that can afford it for years.
The article’s conclusion offers an ominous warning:
The evidence presented in this article suggests that some of these children may be experiencing neuronal cell damage sometime after birth as result of insult. The evidence also suggests that these children may be selectively vulnerable to the impact from external or environmental factors. Some children with autism may be like the canary in the coal mine, exposing policy and/or environmental issues that need to be addressed.
We hope that Congress will be able to say that it has done everything possible to stop and treat this epidemic.
The following organizations represent a broad range of families, advocates, and researchers involved with ASD. We appreciate your efforts and look forward to working with you to pass – and implement – a law that will truly make a meaningful difference for those with ASD and their families.
Sincerely,
The Deirdre Imus Environmental Center for Pediatric Oncology
Autism One
Generation Rescue
National Autism Association
SafeMinds
Talk About Curing Autism (TACA)
November 29, 2006
Cure Autism Now Folded Into Autism Speaks
Autism Speaks is less than two years old, but has alreay swallowed up NAAR and is generating the most press and $$ of any autism group. The Wrights have now brought Cure Autism Now into the fold. CAN speculates that Autism Speaks will be a 100 million dollar per year organization in 5 years.
AS gets CAN's research base, CAN gets AS's money.
The big question remains, will the now uber autism charity Autism Speaks begin paying attention to the DAN! treatments that are actually working and recovering children and improving their lives? Will they put money into research that actually brings results?
They have promised to "listen to parents". I for one plan on being a nagging voice for them to have the chance to listen to.
From Autism Speaks:
From CAN:
and
AS gets CAN's research base, CAN gets AS's money.
The big question remains, will the now uber autism charity Autism Speaks begin paying attention to the DAN! treatments that are actually working and recovering children and improving their lives? Will they put money into research that actually brings results?
They have promised to "listen to parents". I for one plan on being a nagging voice for them to have the chance to listen to.
From Autism Speaks:
NEW YORK, NY – November 29, 2006) – Autism Speaks and Cure Autism Now (CAN) have signed a memorandum of understanding to combine operations, uniting the nation's two leading autism organizations and their cutting-edge programs for research, biomedical treatment and advocacy. The merger was announced today by Mark Roithmayr, president of Autism Speaks, and Peter Bell, president and chief executive officer of CAN. Due diligence and final board approvals are expected to be concluded by February 1, 2007. The consolidated organization will be known as Autism Speaks, Inc.
The consolidation of the two non-profit organizations will provide the scale necessary to respond to the crisis of autism, the nation's fastest-growing developmental disorder. Both groups share a commitment to accelerate and fund biomedical research into the causes, prevention, treatments and cure for Autism Spectrum Disorders; to increase awareness of the disorder; and to improve the quality of life of affected individuals and their families.
“Autism Speaks and Cure Autism Now believe that a combined organization will attract more resources and facilitate large-scale research, while providing the funding necessary to launch planned clinical and quality-of-life programs. A single entity will foster collaboration among the best scientific minds and most dedicated advocates. This is how we will reach our common mission -- finding a cure for autism,” said Bell and Roithmayr in a joint statement.
“Since their founding, Autism Speaks and CAN have committed more than $80 million to autism research and education, established scientific resources, promoted awareness and led federal advocacy efforts,” said Bob Wright, co-founder and board chairman of Autism Speaks. “During the past year, we have worked closely with CAN on critical issues facing the autism community, and now we will truly be able to combine our efforts and passions toward our common goals.”
“When we started CAN ten years ago, they told us you can't hurry science,” said Jonathan Shestack, co-founder of Cure Autism Now. “But with an extraordinary group of committed families and scientists we created a field from scratch and proved that, indeed, you can hurry science. In this next chapter, with Autism Speaks, we intend to move further and faster.”
Autism Spectrum Disorders are diagnosed in one in 166 children, with four times as many boys than girls affected. Autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis.
The combined organization will maintain both Cure Autism Now's and Autism Speaks' national walk programs and professional staffs. The scientific research processes, advisory boards and protocols of each entity will be integrated and flagship CAN programs, including the Autism Genetic Resource Exchange (AGRE), Autism Treatment Network (ATN), Clinical Trials Network (CTN) and Innovative Technology for Autism (ITA), will be expanded.
From CAN:
Dearest Friends:
Though the word friends hardly does justice to how we feel about you. You have been our brothers and sisters, our comrades in battle, our shoulders to cry on, the arms that lift us up. When we look in each otherÂ’s eyes we see the same thing--that crazy mix of determination, sadness, endless love and hope for a better future.
We are writing today to tell you about a big decision that we are making at Cure Autism Now; we pray that it will be the right one and we hope that you will join us.
We have decided that we can best serve the people we love with autism by joining forces with Autism Speaks and becoming one much, much stronger organization. The urgency with which we approach our mission will be the same, the optimism and creativity and compassion will be the same. But we are betting that our ability to get the message out, reach more people and fund more research will be greater. And it needs to be.
Because even though things are better than they were 10 years ago, more people are getting diagnosed than ever before. The numbers are going up not down, there is more sadness not less and there is more that we must get done.
We are bringing our innovative science programs, including AGRE, ATN, Clinical Trials Network and Innovative Technology for Autism. We are creating a new well-funded program that will pursue high risk, high reward research. And we will be adding more money and more reach and the ability to truly spread the message all over the country. We will be joining up with thousands and thousands of other families who are as passionate as we are. And if we were loud before, we will be louder.
We are writing to say that as we join Autism Speaks, we pledge to stay true to everything Cure Autism Now is and to bring that into the new organization. And so we ask you to come with us. We ask you to get more committed, show your passion with even more power and dedication. We will be getting bigger and stronger and tougher and more insistent. As we grow, we will get even faster not slower, our hearts will grow bigger, we will listen to you harder. Whether our kids are 3 or 30, can't say a word or can't stop talking about the baseball schedule, we want better lives for them. And whether we are called Cure Autism Now, Autism Speaks, or that perennial favorite in our house, Autism Sucks, our commitment to a better life for those with autism does not change.
Is there a downside? Well we suppose all those T-shirts and coffee cups become memorabilia, but that is a small price to pay. And at CAN we have always been about building the future, not dwelling on the past. Still now might be a good time to look, for a moment, at what you have done as part of CAN. You have created a field of scientific research where there was nothing. You have written and passed the only important legislation for autism and are about to make history by doing it again with the Combating Autism Act. By creating AGRE, you have changed the way science is done and created the gold standard of collaboration. You have made autism part of the national vocabulary. You have given a voice to people who have no voice. You have insisted that this generation is worth saving.
We are so proud of everything we have accomplished so far and we believe that together, as we become the loudest, largest, most mobilized and powerful force our community has ever seen, we can do twice as much in the future.
Join us. Help us in the next part of the journey. Help us as we help Autism Speaks speak passionately, truthfully and urgently for all of us and our children, now.
Portia Iversen and Jon Shestack
Parents of Dov Shestack, age 14
and
Dear Friends and Family,
It is with great enthusiasm that I announce that Cure Autism Now and
Autism Speaks have signed a memo of understanding to combine
operations, thereby uniting the nation's two leading autism
organizations.
After much deliberation and careful consideration, we truly believe
that speaking with one voice can do the greater good for all
individuals living with autism. By giving the relatively new, yet
highly resourceful organization of Autism Speaks the wisdom and
guidance as well as the already established and innovative programs
of CAN (the Autism Genetic Resource Exchange, Autism Treatment
Network, Clinical Trials Network and Innovative Technology for
Autism, etc) we ensure the maintenance and enhancement of these
existing endeavors as well as future research and treatments for
autism with expanded advocacy and improved quality of life goals.
Some of the many points considered that we felt made this decision
optimum are:
· More resources: Autism Speaks will raise $30-35 million
in '06 (CAN will raise $10.5M). AS science budget is at least $20M
while CAN's is currently less than $8M. AS is expected to be a $100M
organization within 5 years.
· National footprint: AS and CAN chapters are complementary;
combining will establish more presence in local communities. AS has a
strong presence in the NE (New England, Metro NY), South Florida
(Miami/Palm Beach), Pittsburgh and St. Louis while CAN's strength is
in the West Coast (LA, SF, OC, Seattle), Mid-Atlantic (DC, Philly)
and Chicago. AS vision includes a chapter in all 50 states.
· One voice: The autism community will benefit from having a
unified and stronger voice to raise awareness and promote funding for
research and treatments.
· Science: CAN science (staff, advisors and programs) is
second to none. Future funding for key programs will be maintained
and enhanced and significant opportunities will exist for even more
funding of much-needed research through AS' demonstrated fundraising
capacity.
· Awareness: Synergies exist to raise even more awareness for
autism beyond current levels. CAN developed a vocabulary of hope and
urgency; AS has access and resources to distribute messages to a
broader audience.
· Advocacy: CAN and AS have successfully collaborated on the
Combating Autism Act (CAA). Once the CAA passes, the combined entity
will begin to focus on a services bill and possibly state-specific
pieces of legislation due to more resources being available.
· Improved quality of life: Based on increased resources, the
combined organization will be able to concentrate on other programs
that directly benefit those individuals currently affected by autism.
AS currently has a Family Services Committee that we hope to develop
and expand.
All future CAN events such as the Chicago Auto Show, Oscar Night and
WALK NOW will go on as planned. Randy and I will continue to be
involved as these two organizations become one, and we hope we will
be blessed with your continued support.
If you have any questions at all please feel free to contact Randy or
myself at anytime.
Yours truly,
Kim and Randy Wolf
November 28, 2006
Exporting Mercury
U.S. Agency Considers Selling Toxic Stockpile
By Michael Hawthorne
Chicago Tribune staff reporter
November 27, 2006
While the Bush administration promotes efforts to scrub mercury from the
environment, one federal agency is considering selling a huge stockpile of
the toxic metal on the world market.
The Department of Energy acknowledged last week that it is mulling whether
to unload more than 1,300 tons of mercury it collected over the years for
processing materials used to make hydrogen bombs.
Agency officials started discussing a potential sale after U.S. Sen. Barack
Obama (D-Ill.) introduced legislation last summer that would prohibit
American exports of the silvery metal. That bill has a better chance of
passing now that Democrats control Congress.
The need for mercury in military and industrial processes has evaporated
with the development of less harmful alternatives. But the federal
government still holds reserves that account for three-quarters of the
national supply.
If the mercury is sold overseas, scientists and environmental groups are
concerned that it will drift back to the U.S. through air pollution.
"They know it's a global pollutant that can harm people, especially pregnant
women and children," said Linda Greer, director of the environment and
health program at the Natural Resources Defense Council. "If they flood the
market, how do we persuade the rest of the world to work on solving this
problem?"
An Energy Department spokeswoman declined to provide details about the
agency's potential mercury sale, other than to confirm that the option is
under consideration. The agency's stockpile is five times larger than all of
the mercury exported by U.S. businesses in 2004, the last year for which
figures are available.
`Health and ecological risks'
By contrast, the Defense Department decided two years ago to keep its
4,400-ton stockpile off the market. The agency said it opted to store the
mercury to avoid "human health and ecological risks."
Once used widely in batteries, electrical switches and chlorine
manufacturing, mercury now is considered one of the world's most toxic
substances.
Mercury pollution that falls into lakes and rivers is converted into a
dangerous organic form that moves up the food chain from fish to people. The
federal government estimated last year that 410,000 babies are born each
year at risk for mercury poisoning in the U.S. because of high levels in
their mother's bodies.
The largest manmade source of mercury pollution is emissions from coal-fired
power plants, which are responsible for about half of the 3,000 tons of
mercury churned into the atmosphere each year, according to the United
Nations Environment Program.
Bush administration officials have been promoting rules that would curb
emissions from power plants. They also have been encouraging efforts to
recycle mercury-filled switches and other devices.
Gold mining in developing countries is the second largest source of mercury
emissions, releasing about 1,000 tons a year. The UN says most of the
mercury sold on the world market ends up in small-scale mining operations
with little or no equipment to prevent the metal from being released into
the air.
Price is on the rise
The price of mercury has increased along with gold prices during the last
five years. Sellers can fetch more than $700 for a 76-pound flask of
mercury, up from $150 six years ago, the U.S. Geological Survey said.
The European Union is considering a ban on mercury exports, which supporters
argue would shrink global supplies and drive up the cost enough to encourage
alternatives.
"These alternatives will not be adopted by developing countries, however, as
long as mercury remains readily available in worldwide commerce," Obama
wrote this month in a letter urging Energy Secretary Samuel Bodman to block
the agency from selling its stockpile.
A deluge of mercury already is expected on the world market. Two American
chemical plants that use large amounts of mercury to make chlorine are
shutting down, and Obama is pushing another bill that would require six
other chlorine plants to close or switch to mercury-free technology by 2012.
Those plants turn salt, or sodium chloride, into chlorine gas and caustic
soda by pumping a briny solution through electrified vats of mercury. The
industry had more than 2,600 tons of mercury on hand at the end of 2005,
according to the Chlorine Institute, a trade group.
Industry representatives have said they are willing to give up the mercury
if the federal government agrees to take it.
So far federal officials have only agreed to study the issue.
"At this point, we don't support an export ban," said Maria Doa, director of
the National Program Chemicals Division at the U.S. Environmental Protection
Agency. "We want to address the issue of all this excess mercury, but we
need to do it in cooperation with the various stakeholders."
Critics say the Defense Department's decision to set aside its surplus
mercury shows it can be done elsewhere. The 7,500 tons currently held by
government and industry could be stored in a climate-controlled warehouse
the size of a Wal-Mart, Greer said.
`The government is paralyzed'
"For some reason, the government is paralyzed on this," said Michael Bender,
director of the Mercury Policy Project, an advocacy group. "But given what
we know about the toxicity of mercury, keeping it off the world market
should be a no-brainer."
----------
mhawthorne@tribune.com
Copyright (c) 2006, Chicago Tribune
Time: Troubles at the CDC
What Ails The CDC: Staff turnover, morale problems and charges of mismanagement couldn't have come at a worse time for the guardians of U.S. public health
By CHRISTINE GORMAN
Time Magazine
Sunday, Nov. 19, 2006
Julie Gerberding was still a deputy director of the Centers for Disease Control and Prevention (CDC) in 2001 when someone started mailing anthrax spores to newsrooms and politicians' offices around the country. A telegenic personality who connected easily with journalists, Gerberding quickly became the public face of the CDC--a rare cool head among a parade of increasingly confused health bureaucrats. The fumbling she witnessed behind the scenes convinced her that the CDC's troubles extended beyond the need for better communications. She made her case to Tommy Thompson, then Secretary of Health and Human Services (HHS), and within a year was appointed director of the agency--the first woman to hold that job--with a mandate to radically reshape the CDC.
Five years later, Gerberding finds herself in the public eye once again, but this time she's under attack. The massive reorganization she ordered--combined with painful budget cuts in key divisions--seems to be tearing the agency apart. Six directors of the CDC's eight primary scientific centers have left. Researchers are sniping at one another in public and on the Internet. The agency has been targeted by three different congressional probes. And a blistering report, leaked last week, by an outside consultant who studied the agency's response to Hurricane Katrina found chaos and mismanagement at the very top.
Nobody is claiming that the CDC has become another governmental basket case like FEMA--at least not yet. Indeed, the speed with which this past summer's outbreak of lethal food poisoning was traced to spinach tainted by runoff from a particular herd of cows in California is testimony to the CDC's continuing expertise. But the bad publicity comes at the worst possible time for the agency and its director. Congress is wrapping up its final budget for 2007, and the Administration is starting to draw up a preliminary budget for 2008. If lawmakers believe that Gerberding is floundering, her institution's budget will suffer.
That's the last thing the U.S. needs. As the nation's premier guardian of public health, the CDC is responsible for researching, tracking and counteracting newly emerging infectious diseases like West Nile and SARS. Doctors rely on it to develop unbiased recommendations on a wide range of medical issues from when to vaccinate children to how best to battle obesity. It also directs funds to individual state and local public agencies to shore up their own community health efforts.
Ironically, it is increased CDC funding mandated by Congress for high-profile threats like bioterrorism and flu pandemics that has drained money from areas of public health that may actually be more pressing. Among the hardest-hit programs: AIDS prevention (down 19%), tuberculosis control (down 16%) and preventive-health block grants for outbreaks of West Nile disease and other unexpected events (down 17%).
But what really troubles the most vocal critics is their sense that the CDC's devotion to pure science--a long-established mandate to follow the trail of medical evidence wherever it leads--has been sabotaged. AIDS specialists today feel that they are being constrained not to say anything positive about condoms, while others complain that more cash bonuses are being given to administrators than to researchers. "It's the policies and the direction of the institute I'm most concerned about," says Dr. Brad Woodruff, an epidemiologist in the organization's Maternal and Child Nutrition Branch. Woodruff is particularly incensed that the agency's new jet, which is supposed to be for medical emergencies, was used by HHS Secretary Mike Leavitt to make promotional appearances on behalf of President Bush's Medicare drug plan.
The centerpiece of Gerberding's reorganization was her decision to replace the agency's 11 often insular centers with four coordinating bodies that would, in theory, respond to emergencies with more agility. Closer contact between infectious-disease and environmental experts, Gerberding says, has already resulted in faster tests for detecting botulism.
But some within the agency complain that the main difference they have seen so far is that their work is more likely to be second-guessed. "Scientists feel less empowered to make decisions," says Dr. Stephen Cochi, who has worked at the CDC for 24 years, currently in the Global Immunization Division. "There's more bureaucratic filtering." Decisions that were routinely made in Atlanta, he and others say, must now be approved by higher-ups in Washington. Requests for anything but emergency travel have to be made 90 days in advance.
As in so many other internecine battles, it can be hard to tell where the whining stops and the real problems begin. The CDC was due for a major overhaul, and it's human nature--even among scientists--to resist change. What started off as hallway grumbling, however, has grown into an ugly public ruckus, thanks to an unofficial employee blog www.cdcchatter.net and a few well-directed Freedom of Information requests from the Atlanta Journal-Constitution.
Through it all, Gerberding has stood firm. "The CDC was not broken," she says. "The reason to undergo this [reorganization] is that the world was changing so dramatically." As for charges of political interference, she is unapologetic. "This is a public-health agency, and by its very nature, we're never going to satisfy every single constituency," she says candidly. "I tell [Administration officials] this is the science. This is the recommendation. What they do with it is beyond my control."
Not everybody blames Gerberding for the turmoil. "I don't think anyone denies that there's a morale problem at the CDC," says Dr. Georges Benjamin, executive director of the American Public Health Association. But he attributes much of the upheaval to government-wide belt tightening rather than to Gerberding's reorganization, noting that core programs at the CDC have been cut 4.5% in each of the past two fiscal years. He and other experts believe that the agency needs at least $15 billion a year to do all the jobs it has been assigned--nearly twice the current budget of $8.5 billion.
Perhaps the most immediate problem is the number of senior-level people who are leaving. Part of that is an unavoidable function of aging--40% of the CDC's 9,000 employees will be eligible to retire in 2008. But there's also speculation that older scientists are being pushed to leave early. Either way, "you don't replace the experts at CDC easily," says Robert Keegan, deputy director of the agency's Global Immunization Division. "Management has said they've enacted better emergency standards, but until there's an emergency, you don't know."
State and local public-health officials are keeping a close eye on all the drama. "The most difficult organization in the world to change is a successful organization [like the CDC]," says Paul Halverson of the Arkansas department of health and human services. "If you're a company that is losing money every month, then it's easy to see the need to make a change." Of course, in this case, it's not just money but lives that are at stake.
With reporting by Greg Fulton / Atlanta, Alice Park / New York
November 26, 2006
Kirby on HuffPo: The Other Secret Bush Court?
The Other Secret Bush Court?
David Kirby
The Huffington Post
Next year, a "Special Master" in an obscure Federal court known only to a few Americans will preside over a highly sensitive judicial matter of urgent national importance. The Bush Administration wants to hold the hearings in a sealed courtroom, off limits to the press and public, with stiff "sanctions" for any outsider who attempts to gain unauthorized access to the secretive proceedings within.
Terror trials in faraway Gitmo? Good guess. But these are vaccine trials on New York Avenue, in downtown Washington, at the U.S. Court of Federal Claims.
You may not know it, but there is an official federal "vaccine court," where some 4,750 autism-related cases have been pending for years. Claimants believe the mercury-based vaccine preservative, thimerosal, and/or the MMR vaccine, contributed to their children's autism, and they are seeking compensation from a special vaccine injury fund administered by the federal government.
The long-awaited autism vaccine trial will commence on June 11 in the courtroom of Special Master George Hastings. The plaintiffs and their attorneys have asked for complete transparency in every aspect of the tribunal, including public disclosure of all evidence and unhindered media access to the hearings. The few autism families whose medical records will be scrutinized as legal examples are waiving their right to privacy and confidentiality, so that their stories may finally be told in an open court of law.
But the DOJ (technically, the "defense") has other plans. On November 3rd, the Department wrote to Hastings saying it "would oppose public access to the courtroom and public broadcast of the trial," because such an arrangement. "would pose security and privacy concerns" for those in attendance.
Exactly whose privacy are they trying to protect? It can't be the parents, because they don't want privacy. The only party fretting about privacy is the DOJ itself, and presumably, the vaccine makers. (As for "security" concerns, isn't that why we have court officers?).
The government may call this privacy, but I call it secrecy. In fact, there has been a long and unseemly history of secrecy when it comes to federal data on thimerosal and autism.
And let's face it: People don't hide something unless they have something to hide.
Back in 2002, Health and Human Services lawyers quietly slipped into vaccine court to file a protection order to permanently seal all thimerosal-related documents. They proposed sanctions for any lawyer who shared the secret government information with autism families, the public or the press. All thimerosal data would be banned from use in future civil cases, and any materials already given to plaintiffs would be rounded up by federal agents and destroyed. The motion was withdrawn after appropriate public outcry.
Many of those federal documents pertained to an off-limits database called the Vaccine Safety Datalink (VSD), which tracks the medical records of hundreds of thousands of American children. Lawyers for the families have tried to gain access to the VSD for years, including a 2004 "Motion to Compel" that went nowhere.
In 2005, the Institute of Medicine issued a report slamming the Centers for Disease Control and Prevention, which manages the VSD, for a "lack of transparency" in handling the data. Even more alarming, CDC officials testified that the original datasets they examined had "not been archived in a standard fashion," meaning they were either lost, or destroyed. Take your pick.
If the disappearance of these datasets was intentional, that would be a clear violation of the federal Data Quality Act. No wonder the IOM urged vaccine officials to "seek legal advice" on the status of the missing records.
But those missing datasets could well have been a bonanza to attorneys for the autism parents. Now they are gone.
And, without access to any of the raw data to which government lawyers are privy, the families' cases are woefully, and unconstitutionally, disadvantaged. In what other American court of law are defendants allowed access to evidence that is kept secret from plaintiffs?
Meanwhile, family lawyers have received 216,000 pages of discovery materials, sourced from federal agencies and private companies alike. They might well paint an incriminating portrait of thimerosal's role in autism, and that may be why individuals face a $250,000 penalty for any paper that is leaked.
But some documents have already been leaked, including one published in the Los Angeles Times showing that Merck officials knew of the cumulative and alarmingly high levels of mercury in vaccines way back in 1991, but said nothing about it to anyone.
Are there other incriminating memos from Merck (or Lilly or Glaxo, etc.)? My sources indicate that there are, but we may never get to see them. And now, by barring public access to the trial, we may never get to hear them, either.
If the DOJ has its way, only claimants and their attorneys will be allowed to sit in the courtroom, or receive password-enabled access to a live audio webcast of the trial. The media will be barred, and so will everyone else. And though there will be an official written transcript, such documents are sometimes redacted, or even sealed, after the trial.
As a journalist, I will be subject to "sanctions" if I sit in on a webcast without authorization from the court. In fact, unauthorized access to the proceedings, according to the DOJ proposal, might lead to "termination of the webcast and closing of the courtroom."
What remains unclear is whether journalists will be prosecuted for interviewing families who have access to the webcast, or who attend the trial in person. But if I get arrested for hanging around outside the court with my pen and notepad, don't blame me for trying.
Curiously, a final reason cited for barring reporters and others from vaccine court is that "opening the courtroom to the general public would make it more difficult for claimants themselves to attend." I know plenty of parents who would gladly give up their seat for, say, Wolf Blitzer or Brian Williams, but the DOJ apparently hasn't asked them.
I think it's safe to say that the Bush Administration does not want this trial publicized. That seems curious to me. The entire thimerosal question will likely be left up to just one man: Special Master Hastings. Whether he decides for the parents, or for the DOJ, his ruling will forever be considered within a vacuum, subject to intense criticism from either side, unless he agrees that all thimerosal evidence should at long last be made public.
I hope he rules that his courtroom is not Guantanamo. These parents, and the public at large, deserve no less.
----------
PS: My last post predicted that most autism parents would be voting Democratic this November, without giving proper credit to two members of the House GOP. Dan Burton (R-IN) and Dave Weldon (R-FL) are among the most open minded members when it comes to the mercury-autism hypothesis, and I apologize for the omission.
Meanwhile, Rep. Henry Waxman (D-CA) has been hostile, at best, to the theory. I congratulate Rep. Waxman on his ascendancy to the House Government Reform Committee Chairmanship, and respectfully ask him to read "Evidence of Harm," and, if possible and when he has time, to offer a response on the Huffington Post.
CAA Stripped of Usefulness
Because Barton will be loosing his chair in a few weeks, he has decided to try to push through the CAA after taking out all the environmental research. Pretty much no point to the bill any more.
From John Gilmore at ACHAMP
From John Gilmore at ACHAMP
As I am sure most of you may know by now the Combating Autism Act is in under consideration by the House Of Representatives in the Energy and Commerce Committee. Joe Barton, the Chair of the committee, will let the bill go forward if the remaining $45 million for environmental research is stripped out. That will mean that their will be no vaccine research, no mercury research and no enviroenmental research-- which means all the scientific research will be the same old deadend genetics that we have seen yield absolutely nothing except a never ending stream of reports about the newly discovered "autism gene." There must be at least 100 of them by now.
This bill offers us and our children virtually nothing. This bill will set the research agenda for the next five years. We believe that if Barton persists in this posture that we would be better off waiting for the new committee chair who will take over in a few weeks.
Please contact your Representatives in the House and ask them to insist that the environmental and vaccine research provisions be put back in the bill. And please spread the word though any listservs, yahoogroups, blogs, and other online communities or networks of any kind that you may belong to.
You may see the action alert by following the link here. Thanks for your help and this may be the single most important issue we have dealt with in the past few years.
Sincerely,
John Gilmore
Fluoride Dangerous for Infants
ADA reverses position, warns its members that fluoride is too dangerous to be consumed by infants
by: Ben Kage
Tuesday, November 14, 2006
(NewsTarget) On Nov. 9, the American Dental Association released an email
alert to its members warning that, in order to prevent tooth damage,
fluoridated water should not be mixed into formula or foods intended for
babies aged 1 and younger.
Currently, two-thirds of the U.S. public water supply has fluoride
chemicals added, a move centered on a now-disproved theory that fluoride
ingestion prevents cavities. Research by the Centers for Disease Control
has shown that fluoride absorbs into tooth enamel topically, but ingestion
of the chemical can cause adverse reactions. Also, the CDC admitted that
enamel fluoride concentration was not inversely related to cavities.
Fluoridated bottled water is available in stores across the United States
along with instructions to mix into formula, which is what prompted the
ADA to warn its members.
"Infants could receive a greater than optimal amount of fluoride through
liquid concentrate or powdered baby formula that has been mixed with water
containing fluoride during a time that their developing teeth may be
susceptible to enamel fluorosis," stated the ADA report, describing the
condition marked by pitting and white spotting as well as yellow and/or
brown teeth.
Paul Beeber, lawyer and New York State Coalition Opposed to Fluoridation
(NYSCOF) president, noted that news releases from the NYSCOF in 2000 and
2004 cited studies that linked fluorisis to infant foods mixed with
fluoridated water. However, Beeber remarked, it took the ADA until 2006 to
release its alert, right after the FDA disapproved of marketing
fluoridated water to babies in October and the National Research Council
reported that babies are fluoride overdosed from "optimally" fluoridated
water supplies.
"The ADA claims the NRC report didn't question the safety of fluoridation
but it did, as the ADA now admits," Beeber said. "The NRC also revealed
fluoridation's adverse effects to the thyroid gland, diabetics, kidney
patients, high water drinkers and others."
He added that the ADA warning had only gone out to its members, and asked,
"Who will alert parents?"
The Environmental Protection Agency, which sets allowable water fluoride
levels, is required to consider the most vulnerable members of a
population, so allowable fluoride levels should be near zero to protect
infants.
"This should end water fluoridation," Beeber said. "Fluoridation is a
failed concept that must be abandoned before more Americans are harmed."
Study into Raising Glutathione
Researchers in Texas Launch Autism Study Using Protein Supplement
Wednesday November 22, 1:12 pm ET
DALLAS, Texas, Nov. 22 /PRNewswire/ - Scientists at UT Southwestern Medical Center in Dallas and Immunotec Research Ltd. have initiated a study in which a specially formulated whey protein isolate (Immunocal)will be used to raise glutathione levels in an attempt to lessen symptoms of autism.
Autism is a neurological developmental disorder that affects children's ability to socialize normally, impairs language skills, restricts their interests and curiosity and causes other behavioral abnormalities. Most cases are diagnosed before three years of age, and there has been an alarming increase in the number of cases diagnosed over the past two decades. Currently, 1 in every 175 American children is being identified as having autism, and these numbers are on the rise each year. To date, medical treatment of this disorder has been minimally effective.
Although the causes of autism have not been clearly identified, research has suggested that chronic biochemical imbalance plays a role. Studies have shown that levels of the major intracellular antioxidant "Glutathione" is typically about 50% lower in children with autism. Glutathione, which is produced by every cell in the body, is responsible for a number of functions including removing or neutralizing dangerous substances that we are exposed to on a daily basis, including toxic metals. Toxins, pollution, disease, stress, and poor diet can all contribute to loss of glutathione. When glutathione levels reach a critically low degree, we are much more vulnerable to toxins and immune dysfunction.
Principal investigator for this study is Dr. Janet Kern, an adjunct assistant professor of psychiatry at UT Southwestern, which is internationally recognized for its clinical and research programs.
"Some children with autism are poor detoxifiers relative to normally developing children, and in particular, have trouble excreting toxic metals," said Dr. Kern. "Toxic metals that are not eliminated may build up in the brain. Plasma glutathione has been found to be lower in children with autism, particularly, in children with autism who have regressed. We want to clearly establish that raising glutathione levels in these children will improve their ability to detoxify these substances and in that way improve some of their symptoms."
Dr. Jill James, Professor of Pediatrics at University of Arkansas for Medical Sciences, will be a co-investigator. Dr. James is noted for her landmark studies in autism and toxicology and is among the first scientists to point out the links with low glutathione levels. " We know that Immunocal has been used to raise glutathione in other studies very effectively in areas such as cancer and lung disease. We want to take advantage of this same technology", stated James.
The team will be using a protein supplement produced by Immunotec Research Ltd. near Montreal, Quebec, Canada, called "Immunocal". It is identified by the Physicians' Desk Reference (PDR) as a glutathione precursor. Immunotec Research Ltd. has combined rigorous research and business acumen delivering natural healthcare and dietary supplements in 22 countries worldwide.
Source: IMMUNOTEC RESEARCH LTD.
Professor Challenges Autism Assumption
Professor Challenges Autism Assumption: A Willamette U. researcher says the notion that autistic children often have low IQs is flawed
The Oregonian
STEVEN CARTER
Saturday, November 25, 2006
The conventional wisdom that children with autism are often mentally retarded may be wrong, according to research by a Willamette University professor.
Meredyth Goldberg Edelson, trained as a clinical child psychologist, has discovered that decades of literature linking autism with retardation were based on flawed assertions or contained no empirical research at all.
Mental retardation -- as contrasted with the less precise term "mentally disabled" -- is defined by professionals as a disability that occurs before age 18, characterized by an intelligence quotient under 70 and serious limitations in social and adaptive skills.
Goldberg Edelson reviewed 215 studies on autism, dating to 1937, which made 223 claims about the rates of mental retardation in autism. Only 58 of those claims were supported by data, she found, and most researchers stated their results without reporting how they measured intelligence.
Most of the studies that measured intelligence used tests that were inappropriate, Goldberg Edelson found.
"Many times, if the researchers had a child they couldn't test, they just assumed he or she was retarded and assigned a low IQ score," Goldberg Edelson said.
Autism is a developmental disability that causes problems with communications and social interaction. It is characterized by repetitive behavior and devotion to routine. The severity of symptoms varies widely. The cause is suspected to be complicated interactions between environmental and genetic factors that aren't fully understood.
A child's cognitive ability has never been part of the criteria for autism, but it is frequently mentioned as an associated characteristic. A widely used reference book, the "Diagnostic and Statistical Manual of Mental Disorders," says in most cases, autism is accompanied by mild to profound mental retardation. Other current literature says mental retardation accompanies autism in 67 percent to 90 percent of cases.
Goldberg Edelson, a psychology professor, came to autism research through her husband, Stephen M. Edelson, a researcher and author who was studying effective treatments for children with autism. He asked her to check the intelligence of the children in his tests.
Eventually, she tested 293 children and discovered that their IQ frequently was higher than had been determined by prior tests. Goldberg Edelson found that often the children had been given timed tests or tests that required them to follow verbal instructions or give verbal answers, conditions that are frequently hard for autistic children to deal with.
Goldberg Edelson used untimed tests that measured nonverbal intelligence. On average, the children scored a 90 -- near average -- on the IQ scale. Only 19 percent were within the range of mental retardation.
That prompted Edelson to examine the literature on autism.
She found that much of it wasn't legitimate research, and those studies that did assess intelligence were flawed in their methodology. Her results were published recently in Focus on Autism and Other Developmental Disabilities, a scholarly journal on autism.
Bertram Malle, an associate professor of psychology at the University of Oregon, said autism covers a wide spectrum of developmental disorders and some children with autism are highly intelligent.
"It's important for parents of autistic children to understand that there in a huge range of intellectual capacity and behavior," he said. "Some of the behavior is amenable to improvement.
Malle said he's seen cases in his own field, social psychology, in which long-held assertions turn out not to be valid. "Sometimes stereotypical beliefs are held on to," he said. "You make a claim, it's not challenged, and then the claim is repeated to the point that it becomes generally accepted."
Goldberg Edelson said it's clear that the real rate of mental retardation among autistic individuals isn't known. "I think we need to go back to the beginning and find out just what we do and do not know about autism and mental retardation, she siad.
Goldberg Edelson, 45, said she hopes that her research helps prevent therapists and educators from setting artificially low expectations for children with autism.
"In the 1950s, children with autism were institutionalized," she said. "If most children with autism aren't mentally retarded, we need to find ways for them to interact with society and help them become all they can."
Steven Carter: 503-221-8521
November 22, 2006
Death of a Hero
Bernard Rimland was one of my heroes.
If not for him I might be called a Refrigerator Mother.
If not for him Chandler may never have answered to his own name.
That he had the courage in the 60's to stand up to the establishment and say that his son had a medical illness, not psychological scars, changed the paradigm and began the search for treatments. And the first treatment that was found, was not discovered by Dr. Rimland himself, but mothers who began writing to him after his book was published to tell him that their children seemed to get better when they were on B vitamins. He listened to them, and Kirkland Labs listened to him, and the first real study on what would help our children was launched.
It was because he freed those mothers from the guilt that their children's disorder was caused by their lack of love that they could start finding a way to help their children.
If there is ANY justice in this world, Dr. Bernard Rimland will get the Nobel Prize.
The Autism Research Institute
UPDATE:
Autism World Loses A Giant: Bernard Rimland
Autistic children and their parents said goodbye to their best friend and greatest champion on Tuesday, November 21st when Dr. Bernard Rimland, founder and director of the Autism Research Institute, passed away at the age of 78.
Dr. Stephen M. Edelson, who is assuming the position of Director of ARI, says, “Dr. Rimland will go down in history as the person who ended the ‘dark ages’ of autism and spearheaded the fight to bring hope and help to autistic children. When he began his work in the field of autism in the 1960s, psychiatrists blamed parents for their children’s autism, institutionalized those children, and ‘treated’ them by drugging them into submission. Today, autistic children receive effective educational interventions and biomedical treatments that bring about dramatic improvement and often even recovery. At every step of this revolution, Dr. Rimland led the way—and at every step, he had to fight tooth-and-nail against an establishment determined to maintain the status quo.”
Dr. Rimland’s forty years of work on behalf of autistic children began with a single child: his own son, Mark Rimland, born in 1956. In the most recent version of the DAN! treatment manual, Dr. Rimland wrote, “Mark was a screaming, implacable infant who resisted being cuddled and struggled against being picked up. He also struggled against being put down. Our pediatrician, Dr. Black, who had been in practice for 35 years, had never seen nor heard of a child like Mark. Neither Dr. Black nor I, who at that time was three years beyond my Ph.D. in psychology, had ever seen or heard the word ‘autism.’”
It wasn’t until Mark turned two that Dr. Rimland’s wife, Gloria, remembered reading in college about children with symptoms like their child’s. Digging through a dusty box of Gloria’s textbooks in the garage, Dr. Rimland saw the word “autism” for the first time. That discovery was the first step in a quest that covered nearly half a century.
Dr. Rimland’s battle to help autistic children began in the early 1960s, when psychoanalysis reigned and professionals believed that autism stemmed from a “refrigerator mother’s” subconscious rejection of her child. Treatments, prescribed by leading authority Bruno Bettelheim and other psychoanalysts, included having children kick and spit on statues representing their mothers.
Knowing that Mark was a greatly loved child and that the “refrigerator mother” theory was both wrong and destructive, Dr. Rimland set out to discover all that was known about autism. He scoured libraries for articles on autism, including foreign articles he had translated, and found, as he noted later, “not a shred of evidence” to support the hypothesis that bad parenting caused autism.
What he discovered, instead, was powerful evidence that autism was a biological disorder—a fact that seems obvious now, but was revolutionary at the time. He outlined this evidence in his seminal book Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, published in 1964. The book changed the autism world forever: it won the Century Award for distinguished contribution to psychology and, as one reporter put it, “blew Bettelheim’s theory all to hell.” For parents, the nightmare of being blamed for their children’s terrifying disorder was over.
Most people would be content to rest on their laurels at that point, but Dr. Rimland was barely getting warmed up. He’d revolutionized an entire field, but he still had no way to help his own son. So he formed the National Society for Autistic Children (NSAC), now known as the Autism Society of America. Through this group, parents of children with autism—a very rare disorder, at the time—could offer each other moral support and practical advice about which therapies worked and which didn’t.
Dr. Rimland started ASA in large part to promote “behavior modification” (now known as Applied Behavioral Analysis, or ABA), a treatment then being pioneered by a very controversial young psychologist named Ivar Lovaas. Authorities in the autism field scoffed at Lovaas’s claim that autistic children could be helped by something as simple and straightforward as behavior modification, but Dr. Rimland spread the word through NSAC and parents began fighting for this therapy for their children. Today, of course, ABA is the educational treatment of choice for autistic children, and many autistic children who receive early ABA improve dramatically.
Dr. Rimland knew, however, that educational treatments alone could not adequately address a devastating biological disorder such as autism. In 1967, he started the nonprofit Autism Research Institute in order to create a worldwide research center and clearinghouse for biomedical treatments (which barely existed at the time). In 1985, he retired from his career as a psychologist for the Navy to devote the remainder of his life to autism research.
The first treatment Dr. Rimland investigated, based on reports from parents of autistic children, was high-dose vitamin B6. Other authorities in the autism field considered the idea that a vitamin could correct a brain disorder to be preposterous, but time and research proved them wrong. To date, 22 studies (including 13 double-blind studies) show that vitamin B6, typically combined with magnesium, benefits a large percentage of autistic children.
“One of the most remarkable things about Dr. Rimland,” says Dr. Edelson, “is that he realized in the early days that parents held many of the keys to solving the mystery of autism. From day one, he listened to them and respected them—and he followed their lead. If five or six parents reported, ‘DMG makes my child much better,’ he didn’t ignore them; instead, he organized a study to see if other children responded the same way. For a professional psychologist, even one who was the parent of an autistic child, this was a revolutionary viewpoint—and it’s a key reason why ARI has always led the way in identifying new treatments and uncovering the roots of autism.”
One important clue contributed by parents of autistic children put ARI squarely in the middle of a huge controversy: the debate about the safety of vaccines. Early in his work, Dr. Rimland received many reports of children who had no disability before receiving DPT vaccinations. As time went on, the number of reports snowballed, and included other vaccines. At the same time, as the number of vaccines received by children grew, autism rates began climbing relentlessly. When Dr. Rimland learned that most childhood vaccines contained thimerosal—a preservative that is nearly 50% mercury, a powerful neurotoxin—he realized that the escalating numbers of vaccines given to children could be the culprit behind skyrocketing rates of autism. His suspicions grew when he discovered that the symptoms of autism bear many similarities to the symptoms of mercury poisoning.
The medical establishment, not surprisingly, expressed great antagonism toward this theory. They turned a blind eye as well to strong evidence implicating wheat and milk proteins, persistent measles infection in the gut from MMR vaccines, and other environmental factors in causing or exacerbating autism. And they continued to scorn biomedical treatments, even when hundreds and eventually thousands of parents reported that these treatments worked – often dramatically. So Dr. Rimland began yet another new project, this time aimed at quickly identifying causes of autism and promoting the safe and effective treatments that mainstream medicine refused to investigate.
To accomplish this mission he created the Defeat Autism Now! (DAN!) project, jump-starting the project in 199- by bringing together dozens of the world’s leading researchers in different fields to create a state-of-the-art treatment plan and prioritize research goals. This small first meeting grew into a worldwide DAN! movement that now includes huge standing-room-only conferences, major research projects, a treatment manual, and hundreds of DAN!-trained physicians. A happy offshoot of this massive effort is the “Recovered Autistic Children” project, in which parents whose children improve or even recover because of DAN!-oriented treatment are spreading the word that “autism is treatable.” Dr. Rimland and Dr. Edelson also collaborated on Recovering Autistic Children, a book of stories about children who improved or recovered as a result of DAN!-oriented treatment.
In addition to these projects, Dr. Rimland served as a technical advisor for Rainman, the Academy-Award-winning film that introduced millions of moviegoers to the world of the autistic savant. As editor of the Autism Research Review International, now in its twentieth year of publication, he also provided parents and professionals with crucial information about autism treatments and research—as well as with his trademark editorials, often scorching in their condemnation of established medicine’s failure to help autistic children.
Dr. Rimland achieved worldwide fame and a reputation as a giant in his field, and his friends ranged from Hollywood stars to national media figures. Yet unlike many professionals, he didn’t know the meaning of an “ivory tower.” In his few free moments each day, he responded to letters, phone calls, faxes, and emails from thousands of distraught parents around the world. His vast network of friends knew him as an extraordinarily generous soul and an irrepressible “yenta,” whose greatest joy lay in bringing strangers together for the benefit of all. He was also a soft touch, incapable of saying “no” to any worthwhile cause—no matter how large or small. (The San Diego branch of the Autism Society was probably the only chapter whose Christmas party once featured an internationally-renowned autism researcher playing Santa Claus.)
How did Dr. Rimland find time to juggle enough huge projects for ten lifetimes, and also help out every friend (or stranger) who needed a hand? He spent seven days a week in his office. Some nights, he slept on the office floor. And everyone who worked with him knew that if the phone rang at 10 p.m., it was Dr. Rimland with another idea – often an earth-shaking one. (Not all of his ideas and interests involved autism. He owned several patents for inventions, and was an inveterate “tinkerer.”)
Dr. Rimland’s remarkable wife, Gloria, gracefully handled his nearly-impossible schedule while keeping a home with three children running smoothly. The autism community owes a huge debt of gratitude to Gloria Rimland for the inspiration and moral support she provided Dr. Rimland throughout the years – as well as her willingness to share her husband with an entire world of “autism parents.” The autism world sends its deep condolences to Gloria and to their children, Mark, Paul, and Helen.
“Our community is greatly diminished by the loss of Dr. Rimland,” says Dr. Edelson. “His legacy, however, will live on in the work of ARI and the DAN! project – and in the joy of families whose children, dismissed as ‘hopeless’ and ‘incurable’ by the medical establishment, are now leading happy, healthy, productive lives. It’s exactly the legacy that Dr. Rimland would want.
____________
A graveside memorial service will be held tomorrow, Wednesday, November 22,
at 2 pm on the Shalom Lawn at Greenwood Memorial Park in San Diego. The
public is welcome to attend.
In lieu of flowers, Dr. Rimland's family asks that donations be made to the
Autism Research Institute (4182 Adams Avenue, San Diego, CA 92116).
Donations can also be made online on ARI's website www.AutismResearchInstitute.com.
More coverage:
Bernard Rimland; psychologist 'ended the dark ages of autism'
By Jack Williams
STAFF WRITER
Union Tribune
November 22, 2006
Bernard Rimland, a psychologist whose unremitting quest for answers to
autism opened a new era of treatment and hope for victims of the brain
disorder, died of cancer yesterday. He was 78.
Dr. Rimland, executive director and founder of the Autism Research
Institute in Kensington, died at Victoria Special Care in El Cajon, said
Jean Walcher, a spokeswoman for the family.
In challenging the once-prevailing theory that the condition stemmed from
a mother's subconscious rejection of her child, Dr. Rimland found that
autism was a biological disorder. His evidence was outlined in his seminal
book, “Infantile Autism: The Syndrome and Its Implications for a Neural
Theory of Behavior,” published in 1964.
“Dr. Rimland will go down in history as the person who ended the dark ages
of autism and spearheaded the fight to bring hope and help to autistic
children,” said Dr. Stephen M. Edelson, his successor at the helm of the
Autism Research Institute.
As the father of an autistic son, Mark, born in 1956, Dr. Rimland began to
exhaustively research what at the time was a mystery to parents as well as
the medical profession.
In so doing, he once noted, there is “not a shred of evidence” to support
the hypothesis that indifferent parenting caused the disorder.
In 1967, while employed as a Navy psychologist, Dr. Rimland founded his
nonprofit institute a block from his home to create an international
source of research and information for biomedical treatments. When he
retired from his Navy job in 1985, he devoted the rest of his life to
autism research.
“Now I spend 80 hours a week on autism,” he told The San Diego
Union-Tribune in 1998.
“He was the pioneer who changed everything about the way autism is viewed;
parents and professionals owe him everything,” said Chantal Sicile-Kira,
an autism author and activist who has a 17-year-old son with the disorder.
“Bernie was like a god to parents like me,” Sicile-Kira said. “He's
revered all over the world for moving forward biomedical interventions
through research.”
Dr. Rimland created the National Society for Autistic Children, now known
as the Autism Society of America, to bring together parents of children
with autism and to promote a treatment known as Applied Behavior Analysis.
The latter, pioneered by psychologist Ivar Lavaas, has proved successful
as the educational treatment of choice for autistic children.
The national Centers for Disease Control and Prevention estimates that as
many as one in 166 Americans 21 or younger is afflicted with autism, which
affects children in different ways.
The variety of symptoms include withdrawal from human contact, sensory
confusion, parrotlike speech, a compulsion for sameness and a repetitive
self-stimulating behavior such as tapping teeth.
Sometimes the symptoms are accompanied by extraordinary talents, as in the
case of the autistic savant portrayed by Dustin Hoffman in the 1988
Academy Award-winning movie “Rain Man,” for which Dr. Rimland was a
technical adviser.
In the 1990s, Dr. Rimland expanded his influence by co-founding Defeat
Autism Now!, widely known as DAN!, which brought together dozens of the
world's leading researchers in diverse fields to define research goals and
pursue a state-of-the-art treatment plan.
The effort spawned annual conferences on both coasts, major research
projects, a treatment manual and hundreds of DAN!-trained physicians.
Dr. Rimland also reached parents and professionals as editor of a
newsletter, Autism Research Review International, updating readers on
treatments and research.
He was at the forefront of the controversial concept of vitamin therapy to
address autism, particularly high doses of B6. More than 20 studies show
that B6, typically combined with magnesium, benefits a large percentage of
autistic children, according to the Autism Research Institute.
Equally controversial was his suggestion that child vaccines containing
thimerosal, a preservative that is nearly 50 percent mercury, could
promote autism. His suspicions grew when he discovered that symptoms of
autism bear many similarities to the symptoms of mercury poisoning.
“Bernie wasn't afraid to have people say, 'Gosh, this guy's nuts; it's a
crazy idea,' ” Sicile-Kira said. “He felt that if it could be validated by
research it's worth trying so long as it's not going to hurt somebody.”
Dr. Rimland, a San Diegan since 1940, was born Nov. 15, 1928, in Cleveland.
In the early 1950s, he earned bachelor's and master's degrees in
experimental psychology at San Diego State College. He received a
doctorate in the discipline in 1954 from Pennsylvania State University.
As a research psychologist in the Navy, he designed tests to measure a
recruit's aptitude for various jobs. In 1955, he became an adjunct
professor in psychology at San Diego State.
When he became a first-time father in 1956, he began to seek solutions and
answers to his son's behavior.
“Mark was a screaming, implacable infant who resisted being cuddled and
struggled against being picked up. He also struggled against being put
down,” he later wrote.
After finding no psychological basis for the disorder in his research, he
devoted his free time to studying neuropsychology in an effort to
understand the physiological factors. His quest led to the manuscript for
“Infantile Autism,” which received the Award for Distinguished
Contribution to Psychology before it was published as a book.
Once the book was published, he was inundated with letters and calls from
parents.
“I will never stop until I have found the answer or die, whichever comes
first,” he told The San Diego Union in 1988. “I will find the answer, and
if living to be 150 is what it takes – I'll do that, too.”
In recent months, as he fought cancer that originally was diagnosed in the
prostate, Dr. Rimland was forced to reduce his workload. By the end of
July, he was doing what work he could from his home.
Survivors include his wife, Gloria; sons, Mark Rimland and Paul Rimland,
both of San Diego; daughter, Helen Landalf of Seattle; and two
grandchildren.
Services are scheduled for 2 p.m. today at Greenwood Memorial Park, 4300
Imperial Ave., San Diego.
Donations are suggested to The Autism Research Institute, 4182 Adams Ave.,
San Diego, CA 92116.
Jack Williams: (619) 542-4587; jack.williams@uniontrib.com
From USAAA:
This USAAA WeeklyNews Special Edition is dedicated to the memory of Dr. Bernard Rimland
by Lawrence P. Kaplan, PhD
Executive Director, USAAA
I first met Dr. Rimland about ten years ago at an autism conference. I never realized at that time how much he would have impacted my life today. After listening to his conference presentation, my wife and I were excited to learn that we were on the right track with biomedical interventions that we had implemented long before many parents started their journey with alternative medicine.
Fast forward to 2004. I sent Dr. Rimland a galley (an unformatted version of a book's manuscript) of Diagnosis Autism: Now What?, my book that would be published in 2005. Two months later, I received a call from Dr. Rimland endorsing the book as well as spending a considerable amount of time discussing the current autism research. It was after having this memorable discussion with Dr. Rimland that I knew that it was time to form USAAA. I just didn't know when USAAA would become a reality.
My last personal meeting with Dr. Rimland was in the Long Beach Westin Hotel restaurant at a DAN conference in October, 2005. He was sitting in a corner by himself, and I asked him if I might join him for a few minutes. We ended up talking for nearly an hour about how he wanted to form a roundtable group of many autism organizations, including USAAA, to strengthen our position in advancing the cause of including biomedical interventions and environmental research into legislation. For me, it was an invigorating conversation with a soft spoken, well respected individual who had done more for autism than anyone else in the last forty years.
That was the last time I spoke with Dr. Rimland. USAAA was officially founded in July of 2005. In almost a year and a half, we have hosted an international conference (last August); we are co-hosting the Autism Vancouver Biennial Congress next March; we publish a weekly email newsletter to over 50,000 subscribers, and; we are embarking on an exciting new research project in a few months. All of this was developed with the support and inspiration from Dr. Rimland.
His memory will be honored and cherished by all of us who were fortunate enough to know him, as well as the thousands who benefited from his creation of the world-renowned (Autism Research Institute).
We, at US Autism and Asperger Association, will not only remember the incredible dedication of Dr. Rimland and the impact he had on all of us, but will continue his quest to improve the lives of thousands of children with autism - bringing relief, hope, and even recovery to families worldwide.
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