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CDC Wants to Know What You Think About Autism Research

Ginger Taylor ran this for our community at Adventures in Autism.

Click http://www.surveymonkey.com/s/8KBXH7W to respond to the survey so that CDC hears from parents of children at all levels of functioning.

February 2, 2011

CDC has commissioned a survey for stakeholders in the autism community so that they can get a sense of what you think about autism research. I filled out the form and I am sharing my answers with my readers.


(Does anyone find it interesting that the CDC web site has had to add the claim that their health information is "Credible"? Someone is getting sensitive about their information being challenged.)


Evaluating Change Workshop Survey

1. Please indicate your sex:

Male Female


2. Please select your age range:

21 or younger

22-30

31-40

41-50

51 and older



3. Please select your ethnicity:

Hispanic or Latino

Not Hispanic or Latino


4. Please specify your race (check all that apply):

American Indian or Alaska Native

Asian

Black/African American

Native Hawaiian or other Pacific Islander

White/Caucasian


5. Select your region of residence:

Select your region of residence:

Midwest

Northeast

Southeast

Southwest

West


6. What is your area of expertise? (check all that apply)

Epidemiology (The branch of medicine that deals with the study of the causes, distribution, and control of diseases in populations).

Other research field, specify

Clinical

Stakeholder (parent, person with an ASD)

Other (please specify)


7. What is your affiliation? (check all that apply)

Federal government

Academia

State or local government

Advocacy

Parent/family member

Other (please specify)


8. What role does the field of epidemiology have in explaining ASD prevalence increases?

Primary role - it is the major field of science which can address the reasons for ASD prevalence change

Major role - it can provide population-level indicators of risk which need to be further examined by other types of studies

Moderate role - it can provide complimentary information to basic science

Minor role - it can provide a complimentary role to basic science, but cannot provide a great deal of information on the causes of ASDs

Limited or no role - without better understanding the causes of ASDs, it is unlikely epidemiology will provide much explanation

Other (please specify)


9. Do you think the term "epidemic" applies when discussing the occurrence of ASDs?

Yes. Why?

No. Why not and what is the best descriptor?

Comment field

Going from 1 in 10,000 to 1 in 100 in less than thirty years? How is this not a nobrainer?

Rapid increase - yes.
Unexpected increase - yes.

The only way one can get away with NOT calling it an epidemic, is to define epidemic in light of ONLY communicable viral illness, and since there is suspicious that HHV6 and XMRV are involved, you can't rule that out either.

The fact that CDC has not declared an epidemic is an indictment of the CDC.


10. What specific factors do you believe are contributing to the trends in prevalence of autism spectrum disorders over time?

A rapid increase in chemical exposures including, but not limited to: pesticides, environmental pollution, food contamination including the introduction of GMO's, pharmacuticals giving during pregnancy and MOST IMPORTANTLY, the CDC's over aggressive, inadequately researched, indescriminant, irresponsible, corrupt and unconstitutional vaccine program driven by the CDC. This public-private partnership has no true accountability mechanism to prevent it from becoming bolated and from doing widespread neurological and autoimmune damage to our children. It is a runaway train.


11. What specific factors do you believe are contributing to the trends in prevalence of other neurodevelopmental disorders over time?

Corruption.

Those in government, pharma and the chemical industry have abused their power and have poisoned the american people in the name of "health and progress" for their own financial and power gains.


12. Please list 5 things that can be done in the immediate future (next 4 years) to assess the factors you listed in Question 10.

1. Federal law protecting the right of informed consent in vaccination. Every american in every state needs the right to say no to any or all vaccines with out coercion of any kind.
2. Legislation to end the revolving door between public health policy makers and industry insiders. This involves the doing away with "ethics wavers" that allow those with conflicts of interest to participate in policy decisions.
3. The abolition of the National Childhood Vaccine Injury Act. Citizen stake holders should be given the mechanism to force those in control of public health policy and vaccine production to testify under oath. This mechanism exists in the civil court system and the constitutional rights of every American to have access to the courts have been removed in vaccine damage via this unjust law. Public health officials and pharma can now lie to their hearts content and cannot be held accountable by the public. Congress will not hold them accountable.
4. Lengthy investigations by the US Attny General into CDC, FDA and HHS behavior in the autism epidemic.
5. Ethics laws, and laws governing the behavior of those in government and pharma need to be enforced and those found guilty of allowing the poisoning of the american people, specifically children, need to go to jail.


13. If the factors you listed in Question 10 cannot be assessed immediately, what 3 steps can be taken to do so in the future?

The best predictor of future behavior is past behavior.

So I assume that CDC will continue to do what they have been doing... pretending that they care what parents think and that they are doing something about autism, while ignoring parents and doing nothing about autism.

Therefore I expect that they will make a big public fuss about the fact that they put this survey out to hear from parents, while they shove all the complaints from parents about their unconscionable behavior in a drawer.

Since I am sure that the factors in question 10 will never be addressed by your agency, I suggest the three immediate steps:

1. CDC come clean about their autism stance and issue a public statement admitting that they do not care about children with autism and they will not be addressing the problem either from the causation side, nor the treatment side. That way people can stop trusting that you are going to handle the problem and ban together to find their own solutions.
2. Immediately turn over any funding specifically designated for autism research and treatment to the organizations who have actually been thinktanking, researching and finding treatments for autism. I suggest Autism One, The Autism Research Institute and the National Autism Association. I am excluding Autism Speaks, as they waste most of their money on Park Avenue office space, high salaries and parties, and have not come up with ANY treatments after millions in donations over several years. (Remember the best predictor of future behavior is past behavior. Those who are not getting results should NOT be funded. That includes CDC)
3. Admit that you stopped releasing birth cohort prevalance rates for ASD with the 1998 birth cohort because you don't want people to know what happened when thimerosal was revealed to be in the vaccine program at sky high levels and began to be removed. That way states can do their own assessments and make their own determinations on whether or not CDC is giving them good vaccine program advice and whether or not they will adopt the recommendations of the ACIP. States and families are paying for all the damage. You guys just put your policies out there and if it kills every last child in the country, you still get to home at sip wine by the fire every night. There are NO consiquences to CDC if they are completely wrong. So admit it and let everyone else worry about protecting their children. They deserve the right to know that you are not doing it for them.

Can I add a number 4?

4. Stop trying to destroy our doctors and attack parents in the media.

In short... JUST DO NOTHING, IGNORE THE PROBLEM AND LET PEOPLE KNOW YOU ARE IGNORING THE PROBLEM.


14. Please indicate your agreement with the following statement, "In the immediate future (the next 2-3 years) data are available to assess the factors that are contributing to the trends in the prevalence of autism spectrum disorders."

Strongly disagree

Disagree

Neither agree or disagree

Agree

Strongly agree

Please provide additional comments:

The data is available now. You just are not running it. (Well you likely ARE running it, but because the results are an indictment of your own policies, it is more likely that it is not getting published.) CDC is actively burring it. Apparently you think that we are such morons that we can watch CDC issue WEEKLY reports of confirmed cases of H1N1 during the 2009-2010 flu season, but that you just can't tell us how many children born in 2002 have autism? My son is 8, and you can't tell me the autism rate for his birth cohort? And you expect the autism community to believe you are acting in good faith on vaccines and autism! Give me a break.

I read this question and think... "Well lookie here... they are telegraphing their next move. They are going to announce that we should have this in the next two or three years the data they likely have had for the last ten years. That buys them another three year of stalling while they come up with their next move and if not, well that is just the next presidential administrations problem, isn't it?"


15. Please indicate your agreement with the following statement, "The surveillance field can collect and analyze the data required to assess the factors that are contributing to the trends in the prevalence of autism spectrum disorders within the next decade."

Oh! Maybe 2-3 years was not a long enough stall... Now we are talking 10 years! So by that math, the people who made the poisonous policy decisions beginning in the late 1980s will be gone or or close to retirement! Who ever commissioned this stupid stall survey will be summering in the south of France! My son poisoned in 2002 will be 18... too late for treatment and all of the $$$ we spent on his treatment our of our own pocket will be out of our own pocket, and will be too late for interventions that the government could have paid for that would have lead to him living an independent life.

This question is just plain evil and shows you don't give a crap about our kids. Even if this WAS an earnest question, is shows you doing give a damn about our kids. Or ANY kids. "Do vaccines cause autism? Wait right here... I will be back in TEN YEARS to tell you."

Nothing but CYA.

This survey becomes a bigger and bigger joke as I move through it.



16. What do you think is the most likely ratio of identification:risk as an explanation for increases in ASD prevalence?

100% identification : 0% risk

75% identification : 25% risk

50% identification : 50% risk

25% identification : 75% risk

0% identification : 100% risk

Other (please specify)

Does the mob ever send out surveys to the families of their murder victims asking what they think can be done about the high murder rate? Or how many unexplained/unsolved murders or broken kneecaps that they will be willing to tolerate? I wonder.


17. Why do you think prevalence estimates on how common ASDs occur in the population are important?

Because they could point to potential causes, like change points in the toxic loads of infants and toddlers, like increases in the vaccine program and increases in mercury exposures and decreases in mercury exposures. Which is why, I assume, you don't actually do them any more.


18. Why do you think it is important to understand what is contributing to the trends of autism spectrum disorders?

This survey is just making me angry at this point.


19. Please provide additional comments about trends of autism spectrum disorders:

Why? Our community has been screeming at you for ten years and you don't care.

Remember the National Autism Associations 09.09.09 campaign? You were bombarded for an entire day asking how long we were going to have to put up with this garbage and CDC coudn't even pick up a phone or send out a BS press release saying some bland, non-committal, vanilla statement from some low level PR guy saying, "we understand the frustration of these desperate parents and hope to have answers for them in the future".

You disabled my son. The only reason you want information from me is to figure out how to keep getting away with all the damage you are doing.

I hope you will make the most of the invitation that CDC has offered you to give them feedback.

http://www.surveymonkey.com/s/8KBXH7W

Comments

Allen Taloff

Can anyone please explain WHY the below table and reading is not considered.

Furthermore in 1999 the CDC released an ambiguous and weak statement that suggested that in certain low-risk populations physicians could wait until babies were two months of age before they administered their first hepatitis B vaccine. When did this become effective, in the beginning of 1999 middle or end of 1999?

Exposure limits for mercury in infants less than or equal to 6 months of age by percentile body weight established by the Environmental Protection Agency (EPA), the Agency for Toxic Substance Disease Registry (ATSDR), and the Food
and Drug Administration (FDA) Agency

Agency
5th % 50th % 95th %
body weight body weight body weight

EPA 65 ug 89 ug 106 ug
ATSDR 194 ug 266 ug 319 ug
FDA 259 ug 354 ug 425 ug

The EPA guidelines allow for 0.1 mcg per kilogram of body weight per day. Depending on her weight, a three-month-old infant who received 62.5 micrograms of mercury in one day would exceed the EPA guidelines upwards of 78 times.

A typical mercury-containing flu shot has 25 micrograms of mercury in a .5ml dose. A typical adult female weighs about 150-pounds or 68.2kg.

Recognizing the limitations of the methyl to ethyl comparison, the EPA’s recommended maximum daily consumption of methyl-mercury from fish is 0.1mcg/kg/day to prevent health effects in the woman. This 68.2 kg woman should not eat more than 6.82mcg of mercury from fish in a day, but she would be getting 25 mcg of mercury from the vaccine.

To look at one more comparison specific to this fall, the current recommendation is that children age 5-9 need two doses of H1N1 vaccine. If a parent doesn’t ensure that the vaccines are mercury-free, a 50 lb (22.7kg) child (whose maximum methyl-mercury dose from eating fish should be 2.27mcg of mercury daily) would, on two separate occasions, be getting 25 mcg of mercury from their vaccines. If they receive the seasonal flu shots at the same time (2 doses on each of two visits), they would be receiving about 20 times the EPA’s limit for ingested methyl-mercury at each visit!

The FDA in 1999 made a recommendation to manufacturers to remove the mercury from vaccines on the CDC’s recommended schedule for ages birth to three when they realized that children were receiving a cumulative dose of mercury that was potentially harmful. They did not recall the mercury-containing vaccines, nor were they banned. Instead, they allowed existing stocks to be used up, which took several years. Note that the FDA’s directive never applied to vaccines not on the CDC’s recommended childhood schedule (for example, Diphtheria/Tetanus).

The FDA and EPA called for the removal of mercury in infant vaccines beginning in 1999. At that time, vaccine manufacturers agreed to have thimerosal-free vaccines available at the beginning of 2001 and later offered voluntary exchange for all remaining thimerosal vaccines still on the shelf. In July of 1999, the American Academy of Pediatrics (AAP), under the leadership of pediatric vaccinologist Dr. Neal A. Halsey, met with officials from the CDC to ask that the birth dose of Hepatitis B be pushed back as far as six months of age. The CDC and members of its National Immunization Program (NIP) refused, arguing that there was no evidence of harm done. They didn't want to undermine public confidence in the vaccination program. After much negotiation, the CDC released an ambiguous and weak statement that suggested that in certain low-risk populations physicians could wait until babies were two months of age before they administered their first hepatitis B vaccine.


Willie

VACCINES CAUSE AUTISM

Sarah Thank you for your intelligent and thoughtful response.

First off I have previously considered this position of claiming "Underlying Mitochondrial Dysfunction" as was done in the Hanna Poling(sp)case. This was a legal compromise that the parents acquiesced to so that they would avoid going to a expensive legal process and still obtain economic support for their child and I understand that truly I do. However that does not put us anywhere closer to the TRUTH and that is exactly what we all want the truth so we can help our children heal and our families heal(I will not at this time review of the significant devastation wrought by the reality of autism on families from IEP meetings and school issues to feelings of guilt and blame by parents on themselves and each other, loss of intimacy, surreal family, economic and social stress, divorce etc.).

The TRUTH will allow us ASK and RECEIVE from the perpetrators a clean bill of health for these parents.

The TRUTH will allow us a clearer picture, through research and science properly directed at the viruses and elements known and unknown in the vaccines, of a path to a complete cure in some and a better recovery in others.

The TRUTH will allow ALL PARENTS to be informed of the risk of vaccines and their true efficacy( for the record there is no efficacy in my opinion just concealed lies and tales of success)

The perpetrators of this calamity want to frame the debate both the questions and answers so that they can determine the ultimate outcome and ensure that NO ONE is held civilly or criminally liable (the American academy of physicians and surgeons has already testified before congress that the use of the Hep B vaccine in infants constitutes a violation of the Nuremberg Code and meets the definition of unauthorized and criminal human experimentation) so the stakes are high for those involved and they are well aware of it and use all means to protect themselves including the pathological redirection of the once proud New England Journal Of Medicine(NEJM).

The NEJM was once a credible trusted source of information, a staple and pillar, a standard of academia if you will by which all others would be judged. These drug dealers and have not only ATTEMPTED to distort and pervert science but the messengers of science have become their lackeys as well converting the NEJM into a meaningless pharmaceutical propaganda rag of questionable if not dubious ethical and academic origins foundations and supports.

Simply put based on their position The New England Journal Of Medicine NEJM CAN NO LONGER BE TRUSTED They are drug dealer paraphernalia nothing more and certainly less

Please review below the editorial piece foisted on the scientific community through the NEJM by Paul Offit where he quotes Julie Gerberding

Paul A. Offit, M.D.
N Engl J Med 2008; 358:2089-2091May 15, 2008


Paul Offit

"First, whereas it is clear that natural infections can exacerbate symptoms of encephalopathy in patients with mitochondrial enzyme deficiencies, no clear evidence exists that vaccines cause similar exacerbations. Indeed, because children with such deficiencies are particularly susceptible to infections, it is recommended that they receive all vaccines".

Julie Gerberding

"After the Polings' press conference, Julie Gerberding, director of the Centers for Disease Control and Prevention, responded to their claims that vaccines had caused their daughter's autism. “Let me be very clear that the government has made absolutely no statement . . . indicating that vaccines are a cause of autism,” she said.5 Gerberding's biggest challenge was defining the term “autism.” Because autism is a clinical diagnosis, children are labeled as autistic on the basis of a collection of clinical features. Hannah Poling clearly had difficulties with language, speech, and communication. But those features of her condition considered autistic were part of a global encephalopathy caused by a mitochondrial enzyme deficit."


The above is yet another attempt to blame the parents and the children for problems caused by vaccines. Rather than go to court and risk a total loss the point was conceded, with conditions by the government. However the foundation for the denial of services and responsibility for future victims has been thoroughly laid down. Examine the statement by Offit “exacerbate symptoms of encephalopathy in patients with mitochondrial enzyme deficiencies”

Who proved that Hannah Poling had a preexisting mitochondrial disorder? This is a silent mitochondrial disorder with no clinical manifestations? If that were true then if you gave her mother the exact same vaccines should react in the exact same way as even lay people know that the mitochondria are inherited exclusively from the mother. Why sealed the case if it is a simple mitochondrial disorder? If they knew about this before why didn’t’ they warn anybody? Does the drug insert say beware of preexisting mitochondrial disorder?

No the REAL science will ultimately show that the mitochondrial dysfunction and the immunological disorder is brought on by the viruses and their retrovirus passengers that attack an immunocompromised host, OUR children and by the way ALL INFANTS AND TODDLERS ARE BY DEFINITION IMMUNOCOMPROMISED.

My point in all of this is we cannot concede the crux, the very fiber of our contention that VACCINES CAUSED AUTISM in our previously healthy and normal children.

We cannot compromise this point and we must and will prevail as long as we truly believe in truth, real science, ourselves and our families.


VACCINES CAUSE AUTISM

Sherry

I just tried to take the survey but it says,"This survey is now closed." Then when you exit it, CDC website pops up. :(

LainnaLynn

This is simply perfection. No other words to describe it.

AZ Mom

I have mixed-feelings about this. The CDC had NORC contact me for a "vaccination survey", which I declined giving. Bottom line -- I don't trust the CDC's agenda and I don't believe that the CDC cares one wit about our family's experiences with vaccinations.

Sarah

Willie I agree with your posts and you are a force to be reckoned with.

I think need to be specific in this debate. Others have tried the direct "vaccines cause autism" approach and hit the proverbial wall...hard. But, anytime mitochondrial dysfunction in Autism is brought up, they back down. The Mito-autism studies are our best weapon. The "weight of evidence" is tipping and that scares them.

They work for the gov't, they understand bureaucratize.. this is the language they speak. We should speak their language with the science to back it up otherwise they'll shut us down.

I think it's accurate to say:

Vaccines can aggravate the mitochondria and contribute to mitochondrial toxicity which results in dyfunction causing autistic behaviors.

Translation: vaccine cause autism

I must have mentioned vaccines 10 times in my response but you have to connect it to what the science is saying. That our kid have an underlying mitochondrial dysfunction. That vaccines aggravate/ can be toxic the mitochondria.

The question is: will the CDC really listen?

Willie

VACCINES CAUSE AUTISM

10.What specific factors do you believe are contributing to the trends in prevalence of autism spectrum disorders over time?

"A rapid increase in chemical exposures including, but not limited to: pesticides, environmental pollution, food contamination including the introduction of GMO's, pharmacuticals giving during pregnancy..."


REAL ANS. VACCINES VACCINES VACCINES VACCINES VACCINES VACCINES VACCINES VACCINES VACCINES VACCINES

PEOPLE PLEASE STOP BEATING OFF OVER THIS QUESTION, FOR GOD'S SAKE PLEASE

Most if not all of you saw a significant change in your child after the vaccinations SO JUST SAY THAT AND STOP BEATING AROUND THE PROVERBIAL BUSH !!! It is ok to tell the truth really it is!!

VACCINES CAUSE AUTISM


angie

18. Why do you think it is important to understand what is contributing to the trends of autism spectrum disorders?

My quirky little hangup with the Judeo-Christian ethic of thou shalt not kill.....

This was really good Ginger!

aidan walsh

the ncf in boston run by gail kansky has found in the research they are funding is ciguetera (epitope)toxins with a very strong link to low level radiation...the ciguetera assay has been replicated and is proven science that claims to be the key to all auto-immune disorders...this work first originated in 2003 and still to this date the c.d.c. or n.i.h. has done nothing...to further this research they need more private donations to get this research further and out to the sick and dying...anyone who thinks they can help please send even small contributions to this non-profit organization...100% of your donations go to full research purposes...there are no paid employees in this foundation and is a tax deductable organization...why give governments any of your hard earned tax dollars when our children continue to suffer and die...i do not believe in 'xmrv' hype and until it is replicated science i will continue to do so... besides the ncf has already proven that 'stat 1' is disrupted in auto immune disorders...they need your help to further their very important findings... thanks, sincerely aidan walsh southampton, u.k. p.s. maybe in the meantime these sites could help children with autism disease and other chronic illnesses... www.watercure.com www.watercure2.org

Tracy smith

wow.....I love this ....getting ready to fill mine out....My son too was vaccinated just after his second b-day, by the time we got home he was running a high fever and seizuring, we get to the hospital the say he has measles? WTF. Big pharma / government coverup, they think they have silenced us, distracted us with the whole H1n1 scare, and now think they have everybody on the same page that vaccines had nothing to do with autism, well they are about to be sadly mistaken!!

Zed

I submitted mine, too. As for #18, I couldn't resist chastising this AGENCY for trying to make the victims of ITS incompetency tell them how to do their damn job. Besides, I thought the parents within the autism community were to "emotional" and "scientifically uneducated" to know anything useful, right?

patrick

I don't understand the CDC. I'm picturing those monkeys...don't see, don't hear, don't speak. There is actually a fourth...don't do.

Sarah

Our kids are being poisoned right under their noses and they don't even see it...idiots!

Ginger and Dan, great responses!

Kevin

You're right. What a crock of shit. I can't believe that they asked some of those questions. Apparently, they do not have children with ASD nor do they know anyone with ASDs.

@Dan Burns, just what I was thinking...

GH

18. Why do you think it is important to understand what is contributing to the trends of autism spectrum disorders?

I wonder if in the history of man a more stupid question has ever been asked.


Ginger - brilliant job. Just brilliant.

sara

awesome comments..going to specifically add in Tylenol here. Parents have been giving this drug to babies and children like candy for the past 20 years...Now we find out it reduces the immune response AND causes liver damage. I imagine when given with vaccines its a no brainer that 1) The live vaccines LOVE it when the immune system doesn't work and 2) impairing the liver's ability to detoxify (even temporarily) causes the body to put the immediate toxic overload elsewhere

Dan E. Burns - SavingBenBook.com

Great template, Ginger. Here's my answer to the CDC's idiotic question eighteen.

18. See those angry Egyptians in Cairo's freedom square? Parents of children with autism are just as angry. What would happen if we came to your neighborhood: the National Mall. Would that get you out of your chairs?

Judith

Gee...did you copy mine...cause the one I sent in yesterday looked nearly identical to this one...

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