NIMH Wants to Know What Direction Autism Research Should Go

... or at least they say they do.

I encourage you to write to them tomorrow and let them know what you would like looked at. Take a moment right now to put your thoughts down to be sure you get it in by the Jan 4th deadline.

From NAA:

Respond to NIMH's Request for Information about Autism Research Priorities


Due Tomorrow, January 4, 2008

Request for Information (RFI): Research Priorities for the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorders (ASD)

The purpose of this time-sensitive RFI is to seek input from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, state and local programs for ASD, and the public at large about what they consider to be high-priority research questions.

Background
The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and requires that the IACC develop a strategic plan for ASD research. The IACC includes both Federal and public members who are active in the area of ASD research funding, services, or advocacy. In its inaugural meeting on November 30, 2007, the IACC approved a process for developing the strategic plan that includes multiple opportunities for stakeholder input. This RFI is a first step in receiving broad input at the beginning stages of plan development.

To identify research priorities for possible inclusion in the strategic plan for ASD research, the IACC will convene several scientific workshops in January 2008. The responses received through this RFI will be collated, summarized, and provided to workshop participants. The scientific workshops will be organized around four broad areas of ASD research:

Treatment - includes ASD treatment, intervention, and services research that aim to reduce symptoms, promote development, and improve outcomes. This area includes the development and evaluation of medical, behavioral, educational, and complementary interventions for ASD. In addition, this area includes research studies that evaluate the effectiveness of treatments in real world settings, disparities in ASD treatment among specific subpopulations, practice patterns in ASD programs and services, and their cost-effectiveness.

Diagnosis - is concerned with the accurate and valid description of ASD (phenotype) both at the individual and the population level. The public health impact of ASD can be better understood by such studies. In addition, this area concerns itself with the diversity of what constitutes ASD and the characteristics of the condition over the lifespan.

Risk Factors - has to do with investigations of the factors that contribute to the risk of having an ASD in a given person or population. This includes genetic studies of clusters or sporadic occurrences of ASD, studies that focus on environmental factors, e.g., intrauterine events or exposure to toxins, which could lead to ASD, and the interaction between these factors that concentrate risk for ASD.

Biology -studies the underlying biological processes that lead to developmental and medical problems associated with ASD. This includes research in the area of neurosciences but does not confine itself to neurosciences. Therefore, research on other organ systems, interactions between organ systems, and/or other disease processes are included in this area.

The development of the strategic plan is expected to take approximately six months and will include several additional opportunities for public input.

Information Requested
We are interested in receiving your input and ideas about what are high-priority questions and issues for advancing research on ASD. We ask for your constructive and specific suggestions in the following areas (please refer to the above descriptions for each area).

What topics or issues need to be addressed to advance research on the:

1. Treatment of ASD?
2. Diagnosis of ASD?
3. Risk factors for ASD?
4. Biology of ASD?
5. Other areas of ASD research?

Responses
Please send responses to iacc@mail.nih.gov no later than January 4, 2008.

Please limit your response to two pages and mark it with this RFI identifier NOT-MH-08-103 in the subject line. The responses received through this RFI will be collated, summarized, and provided to scientific workshop participants in January 2008. Summarized results will also be made available to the public. Any proprietary information should be so marked. Respondents will receive an email confirmation acknowledging receipt of their response, but will not receive individualized feedback.

------------- end of NIMH message -------------

The following are suggested topics to cover:

* Highest priority should be on preventing new cases and treating individuals already affected.
* Congress made clear in the Combating Autism Act legislative history that NIH MUST investigate vaccines including preservatives as possible causes.
* A vaccinated vs. unvaccinated population study must be conducted.
* In order to better understand the mechanisms of autism onset, and consistent with new emphasis on early detection and treatment, a specific program should be undertaken, probably inpatient, to study newly diagnosed (suspected) cases of ASD to examine in vivo the specific processes and developmental mechanisms involved during onset.
* Documentation and publication of "recovered" cases.
* Evidence-based validation or rejection of treatments (behavioral and biomedical) currently being used to treat existing cases.

Process issues at NIH regarding autism research

* All workshops and workgroup meetings must be open to interested parties.
* Transparency and frequent opportunities for public input and feedback.
* The urgency of the epidemic demands all deliberate speed.
* Workgroup Chairmen must not have financial conflicts.
* Workgroups and workshops must have balance reflecting the diversity of views on cause and treatments for ASD, and not be biased toward past paradigms.
* The point of the Congressional mandate in the Combating Autism Act was to reprioritize and redirect research funding, not to simply repeat past funding hoping for a different outcome.

Sneaky Senate

The politics of Autism just gets odder and odder. It seems to be about being able to say that things are being done with out doing anything, and that open conversation is taking place when the conversation is being strictly controlled. The voices that would ask the right questions are not allowed into the room.

From A-CHAMP:

Surprise Senate Hearing on Combating Autism - Community Not Notified

We learned for the first time Thursday that the Senate has scheduled a hearing Tuesday, April 17, 2007 entitled "Combating Autism: Undertaking a Coordinated Response". There was no notice of this hearing to the many autism organizations other than Autism Speaks and possibly ASA. We learned of it only because one of our CAA Watch A-CHAMP District Leaders inadvertently heard of the hearing from a highly placed source.

Many of us have placed calls to Subcommittee Chair Sen. Harkin's staff, including members of our strong Iowa contingent. None of us have had the courtesy of a return phone call.

The list of witnesses is pasted below.

On the second panel are two representatives of Autism Speaks and Dr. Judy Favell, former President of the American Psychological Association, Division 33. Dr. Favell is a behaviorist who received a large Dept of Education grant to research the provision of services to children with autism by interactive video. The program, called "telehealth" involves installing a video camera in one's home so that families may engage in therapy sessions at long distrance by video.

Dr. Favell appears to be closely associated with three for-profit ventures. One is Advoserv (www.advoserv.com), a Florida corporation that provides residential and other services in Florida, Delaware, Maryland and New Jersey. The second is Cnow, billed as committed to being the "nation's premier telehealth solutions provider." (http://www.cnowinc.com/) The third venture is the National Institute of Telehealth, which develops the behavioral treatment plan that is implemented via video. Telehealth and telemedicine research is being funded by NIMH, headed by Dr. Insel, one of the witnesses at the hearing. (http://tinyurl.com/2uzyje)

No stakeholders are participating in this hearing.
Welcome to the BRAVE NEW WORLD of autism.

Senate Committee on Appropriations
Hearing Schedule for the Week of April 13, 2007

For more information, media should contact (202) 224-3904.

Tuesday April 17, 2007
2:00 p.m. Labor, Health and Human Services, and Education SD-124
Agenda: Combating Autism: Undertaking a Coordinated Response

Witnesses: Panel I:
Dr. Julie Gerberding, Director
Centers for Disease Control and Prevention
Atlanta, Georgia
Dr. Thomas R. Insel, Director
National Institute of Mental Health
Bethesda, Maryland

Panel II:
Robert C. Wright
Vice Chairman and Executive Officer
General Electric Foundation
Fairfield, Connecticut
Dr. Judith E. Favell
Chief Executive Officer, AdvoServ
Executive Director, The Celeste Foundation
Mount Dora, Florida
Bradley Whitford
Volunteer Spokesperson
for Autism Speaks Organization
New York, New York

Newsflash: Autism is expensive

Autism costs society an estimated $3M per patient
Peter Broderick
617-349-2882
JAMA and Archives Journals


Each individual with autism accrues about $3.2 million in costs to society over his or her lifetime, with lost productivity and adult care being the most expensive components, according to a report in the April issue of Archives of Pediatrics & Adolescent Medicine, a theme issue on autism spectrum disorders.

Autism costs society more than $35 billion in direct and indirect expenses each year, according to background information in the article. Relatively little is known about when these costs occur across the lifetime of an individual with autism.

Michael L. Ganz, M.S., Ph.D., Abt Associates Inc., Lexington, Mass., and Harvard School of Public Health, Boston, used data from the medical literature and from national surveys to estimate the direct medical and non-medical costs of autism, including prescription medications, adult care, special education and behavioral therapies. Approximate indirect costs, including lost productivity of both individuals with autism and their parents, were calculated by projecting average earnings and benefits at each age, adjusted for the fact that some autistic individuals can work in supported environments. Only costs directly linked to autism, and no medical or non-medical costs that would be incurred by individuals with or without autism, were included.

These costs were projected across the lifetime of a hypothetical group of individuals born in 2000 and diagnosed with autism in 2003. Costs estimates were broken down into age groups at five-year intervals, with the youngest group age 3 to 7 years and the oldest age 63 to 66 years.

"Direct medical costs are quite high for the first five years of life (average of around $35,000), start to decline substantially by age 8 years (around $6,000) and continue to decline through the end of life to around $1,000," Dr. Ganz writes. "Direct non-medical costs vary around $10,000 to approximately $16,000 during the first 20 years of life, peak in the 23- to 27-year age range (around $27,500) and then steadily decline to the end of life to around $8,000 in the last age group. Indirect costs also display a similar pattern, decreasing from around $43,000 in early life, peaking at ages 23 to 27 years (around $52,000) and declining through the end of life to $0."

Over an individual's life, lost productivity and other indirect costs make up 59.3 percent of total autism-related costs. Direct medical costs comprise 9.7 percent of total costs; the largest medical cost, behavioral therapy, accounts for 6.5 percent of total costs. Non-medical direct costs such as child care and home modifications comprise 31 percent of total lifetime costs.

Because these costs are incurred by different segments of society at different points in an autistic patient's life, a detailed understanding of these expenses could help planners, policymakers and families make decisions about autism care and treatment, Dr. Ganz notes. "Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood," he concludes. "These results may imply that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood."


###

(Arch Pediatric Adolesc Med. 2007;161:343-349. Available pre-embargo to the media at www.jamamedia.org.)

Editor's Note: Please see the article for additional information, including other authors, author contributions and affiliations, financial disclosures, funding and support, etc.

PLEASE NOTE: Radio actualities from Michael L. Ganz, M.S., Ph.D., will be available in mp3 format on www.jamamedia.org at 3 p.m. CT on Monday, April 2.

A-CHAMP needs You

From A-CHAMP:

A-CHAMP needs YOU!!!

Passion and Drive alone will not get the work done!

A-CHAMP is a national, non-partisan political action committee formed by parents in support of children with neurodevelopmental and communication disorders. We are dedicated to advancing public policy issues affecting our children, protecting their human and civil rights, educating the public and media, supporting candidates sharing our goals in state and federal elections, and holding accountable those in government who do not act in the best interest of our children.

In our short history, we have successfully:

• Initiated and coordinated state legislative efforts aimed at banning thimerosal from vaccines, achieving success in California, Delaware, Iowa, Missouri, New York and Washington

• Took the lead and forged a collaboration with 50 organizations leading to the passage of an autism insurance reform law that stops discrimination against treatment for autism spectrum disorder. Effective 1/1/07

• Contributed significant background documentation to the Columbia Journalism Review that resulted in an impressive critique of the NY Times and other media coverage regarding the thimerosal/autism controversy.

• Provided information for Robert Kennedy, Jr., contributing to his article “Deadly Immunity” which appeared in Rolling Stone and Salon.com. and Huffington Post op-eds.

• Coordinated The Power of Parents Rally in Washington, DC, October, 2005, gaining support from over 70 other organizations.

• Coordinated The Mercury Generation March and Lobbying Day in Washington, DC in coordination with the DAN! Conference in April, 2006

...and much more.


NOW for us to take on the tough issues for the years to come, we need your help. Our plan includes:

• Acceptance of the biomedical treatments our children need
• Insurance reform to pay for those treatments (state and federal)
• Legislation aimed at respite services and supportive home care
• Environmental research that focuses on vaccines
• Safer mercury-free vaccines and drugs
• Obtaining access to the Vaccine Safety Datalink
• Access to justice and reform of the Vaccine Injury Compensation Program

How can you help? We need donations to keep working for the children. Whether the donation is for $5 or $5,000, any donation is appreciated.

We have established a donations page on our website through Pay Pal, available at http://www.a-champ.org/donate.html .
If you would prefer to send a check to help continue the work of A-CHAMP, please make check payable to "A-CHAMP" mail it to:
A-CHAMP
c/o R. Krakow
2001 Marcus Avenue
Suite N125
Lake Success
New York 11042.

Your donations are appreciated will make a difference no matter how much or how little you contribute.
Sincerely,

A-CHAMP


A-Champ is a 501 (c)4 Political Action Organization, all donations are not tax deductible.
http://www.a-champ.org/donate.html

On behalf of all of kids thank you!

Autism in China

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.

Outing the Gay Republicans of Autism?

John Gilmore of A-CHAMP asks the question, should high profile closet DAN! families be outed?

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?

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

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:

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

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

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

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

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.

From PutChildrenFirst.com

Press Briefing:

Thank you all for your time today. My name is JB Handley. Along with
my wife, Lisa, I am the co-founder of putchildrenfirst, the sponsor
of this survey of over 9,000 Americans on mercury in the flu shot.
Here's a quick test for all of you. We all know household paint is a
bit toxic. Would you rather A, spill some paint on your skin? Or, B,
take that same amount of paint, pop it in a syringe, and mainline it?
If you chose A, as our survey revealed, you are like most Americans.
If you chose B, you're like the FDA, who made it a high priority to
get mercury out of topical products we use on our skin in the 1990s,
but continued to allow mercury to be injected into humans at levels
exceeding any available safety standard. In fact, we don't even have
safety standards for injected mercury, because no one considered
someone would be crazy enough to inject a well-known neurotoxin into
their bloodstream. It's actually the preposterous nature of the
situation we find ourselves in today that contributes to the public's
confusion. I find that the first time I tell people mercury is in
their flu shot, they simply don't believe me.

Our health authorities realized mercury in vaccines was a mistake in
1999 and made a public statement to warn Americans and encourage
manufacturers to change their formulations. Seven years later, we're
still talking about mercury. That's part of the problem. Our survey
showed that almost no one realizes mercury is STILL in over 90% of
this year's flu shot supply. When they find out the truth, more than
three-quarters know to stay away from mercury and even more think
children and pregnant women should avoid it.

The CDC provides a number of answers for why mercury is still used in
vaccines, none of which can be supported with any facts or evidence.
They will characterize Thimerosal's toxicity as theoretical when in
fact there is nothing theoretical about mercury's dangers. They will
tell you ethyl-mercury, the kind used in Thimerosal, is less toxic.
There is no data to support this and in fact a recent biological
study disproved this completely. They will tell you that the flu can
kill which should certainly trump any danger posed by mercury. Yet,
they fail to mention their own recent admission in an October 2006
study in the Journal of the American Medical Association where four
CDC authors write: "It is also important to note that there is scant
data on the efficacy and effectiveness of influenza vaccine in young
children." And a British Medical Journal article the same month,
October 2006, noted "Evidence from systematic reviews shows that
[flu vaccines] have little or no effect on the effects measured." If
a company sold a product that didn't work and left behind a
neurotoxin they would already be bankrupt.

Anytime Thimerosal is mentioned, autism is brought up. We are not
here to talk about autism today. We are here to tell you that
Americans do not want mercury in their shots but few know it's there.
The CDC tries to make an argument that because they believe, through
their research, that Thimerosal is not responsible for the autism
epidemic, that makes Thimerosal safe. That is one high threshold for
safety. Interestingly, CDC never mentions that in the 2003 study they
authored in Pediatrics, they did find a correlation between
Thimerosal and both "tics" and "language delay." So, here's another
test for you. You bring your child in for a flu shot. The Doctor
tells you this shot has mercury, and that CDC found shots with
mercury lead to tics and language delay. What do you do?

The CDC wants you, the journalists, to report on the dire need for
all Americans to get a flu shot. In 2004, at a Vaccine Summit, the
British Medical Journal wrote the following, in criticizing what they
called the CDC's "marketing of fear"
"Glen Nowak, associate director for communications at the NIP, spoke
on using the media to boost demand for the vaccine. One step of
a "Seven-Step `Recipe' for Generating Interest in, and Demand for,
Flu Vaccination" occurs when "medical experts and public health
authorities publicly...state concern and alarm (and predict dire
outcomes) - and urge influenza vaccination"

My four year old son suffered an adverse reaction to a mercury
containing flu shot. That's why I'm here talking to you. His symptoms
included, and I quote, "brain damage, incoordination, seizures,
inability to speak and problems of his nervous and digestive system."
Those were my son's symptoms, but that quote is not from his medical
records. It's from the CDC's own website, discussing the harmful side-
effects of mercury, where they go on to warn all Americans to "keep
all mercury-containing medicines away from children."

Our survey proves that Americans understand this. Why doesn't the CDC?