Conducting Autism Research Like It's 1994

In 1994, the National Alliance for Autism Research was born. They were dedicated to genetics research for autism. Three years ago, they were absorbed into Autism Speaks. Now, fifteen years after their inception, millions of dollars spent and tens of thousands of children diagnosed with autism later, they appear to have extricated themselves from Autism Speaks and returned to the stage as the Autism Science Foundation.

Their mission? To boldly go back to exactly what they were doing before doctors and researchers and even some uppity folks at Autism Speaks started asking pesky questions about vaccines. (I've heard they have IBM Selectric typewriters on every desk and will serve Jello 1-2-3 in the caf!)

The folks at ASF include Dr. Eric London, the psychiatrist who started NAAR, Alison Singer, former Executive Director of Autism Speaks and Dr. Paul Offit. (He's an infectious disease expert and vaccine patent holder from CHOP who doesn't treat children with autism but knows for a fact what doesn't cause it and how not to treat it. That's a neat trick isn't it?) They have decided and stated that the autism/vaccine issue is 100% closed and so they will not purse that avenue of research. That is certainly their right. Here's part of their mission statement:

Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.You can read about the "numerous studies" they refer to HERE.

How does a scientific foundation rule out a major (and controversial) hypothesis from the get go? If the American Lung Association had spun off a new group headed up by those with a strong allegiance to Philip Morris and called themselves, INCS ("It's Not Cigs Stupid!") would anyone take them seriously outside of those with a financial interest in cigarettes?

Meanwhile, fast forward to the year 2009, a ballsy researcher named Jones in the UK is ruffling feathers by suggesting that genetics research overall has not borne out the cures as hoped. (Don't we know it?) Writing in The Daily Telegraph today, the academic and author called for a complete overhaul of the "scattergun" approach to genetic research, which is backed by millions of pounds in funding by governments and medical charities such as the Wellcome Trust.

Prof Jones said he was one of a number of "renegade" scientists who were beginning to question the research. "It's not done to kill the goose that lays the golden eggs, nor to bite the hand that feeds you -- nor, in my own profession, to criticise the research program of the Wellcome Trust, an enormously rich charity that paid much of the bill to read the message written in human DNA.

"Not done, perhaps: but a pack of renegade biologists has turned on that source of nutrition to claim that what it is doing is welcome, but plain wrong."

"We thought it [genetic research] was going to change our lives but that has turned out to be a false dawn." (HERE)

A "False dawn." Sounds a bit like Dr. Offit's book Autism's False Prophets got tangled up with an Autism Mom vampire, doesn't it? No matter. The door is not closed to vaccination injury and how it relates to autism.

One of the most trusted doctors in America, and former head of the National Institutes of Health, Dr. Bernadine Healy, has been sounding the alarm for over a year now. You may have seen her on Larry King Live a few weeks ago where she questioned giving Hepatitis B vaccine to newborns, for instance. Or on CBS last year. HuffPo blogger David Kirby wrote about the CBS interview last spring, (HERE.)

Dr. Healy wrote in US News earlier this month:

The debate rolls on -- even about research. The Institute of Medicine in its last report on vaccines and autism in 2004 said that more research on the vaccine question is counterproductive: Finding a susceptibility to this risk in some infants would call into question the universal vaccination strategy that is a bedrock of immunization programs and could lead to widespread rejection of vaccines. The IOM concluded that efforts to find a link between vaccines and autism "must be balanced against the broader benefit of the current vaccine program for all children."

Wow. Medicine has moved ahead only because doctors, researchers, and yes, families, have openly challenged even the most sacred medical dogma. At the risk of incurring the wrath of some of my dearest colleagues, I say thank goodness for the vaccine court. (HERE)

The debate certainly rolls on -- despite NBC's Dr. Nancy Snyderman sniping at Matt Lauer this past Spring, "There is no controversy!" as she shilled her book. Jim Carrey wrote about vaccines and autism and got over 3900 comments (and counting) right here at HuffPo, see: "The Judgement on Vaccines and Autism is In?"

The Autism Science Foundation with it's clear cut "we promise not to look at vaccines" mission will reel in research dollars from the very institutions who have the most to lose if vaccination safety is found to be lacking. I assume Pharma is gleefully writing funding checks right now.

I'm not sure ASF has installed their Trimline phones yet. When they do, will someone please ring them up and tell them that OJ Simpson is trying to reach them. He says he's available to help them look for the cause of autism.

Comments

[James Bevan]

You might want to see some of the damage this anti-vaccine fearmongering is leading to:

http://online.wsj.com/article/SB124165229009493675.html

[Hydra8]

And who's fault might that be?

[ICBluejay]

Listen to this week's Nature PodCast (April 30, 2009). Yet another genetic study shows it's cadherins in all spectrum disorders. Statistical correlation achieved something no "vaccine" study has ever had.

[maggiemom]

Okay what about the other 99%?

[nhokkanen]

Another comment attributed to Boyd E. Haley, PhD, mercury researcher and former chemistry chair at the University of Kentucky:

"It is the inability to see the effects of chronic, low level toxicities on human health that has been –– and remains –– our greatest failing as intelligent beings."

This poisoned country needs to ditch the focus on psychological labels and finally start looking at environmental toxins. Especially those paradoxically administered in the name of health; they are the most easily preventable sources, as long as profiteering is removed from the equation.

[Kim Stagliano - Huffpost Blogger]

This letter to the editor ran in the NYT last week after the article about the lack of productive/useable treatment from decades and billions spent on genetics research for disease. Genes + Environment = disease in many/most cases. There's the "genetics load the gun, environment pulls the trigger." ASF's charter includes ignoring the greatest impact on a child's immune system - the vaccination program.

“Study of Genes and Diseases at an Impasse” (front page, April 16) suggests future research directions. There is increasing evidence that the genes being studied are disease risk genes, not disease causative genes. Thus, studying the genes alone will not yield useful answers, as has been shown.

Many chronic diseases, including some cancers, appear to be products of risk genes plus an environmental factor. For example, a mutation in one specific gene makes a person more susceptible to the bacteria causing tuberculosis.

Similarly, gene polymorphisms and the Helicobacter pylori bacteria jointly cause ulcers and stomach cancers. A combination of risk genes plus infections and other environmental factors has also been proposed to account for schizophrenia and bipolar disorder.

Future research should include both genes and environmental factors.

Robert H. Yolken

E. Fuller Torrey

Baltimore, April 16, 2009

The writers, both medical doctors, are, respectively, a professor of pediatrics at Johns Hopkins University School of Medicine; and executive director of the Stanley Medical Research Institute.

[maggiemom]

That is the truth that is missed by the "either or" mentallity..thank you for trying to promote reason!

[CarolynBichonHMB]

I am genetically predisposed to drown if I am held under water too long!

[Hydra8]

Surprisingly no one is asking the loaded question-why did they not find a "genetic" component before vaccinating everyone in the country with the current schedule? Oh, that question.

[hendersonwood]

Oh for a great video - David Kirby interviewing Katie Wright.

You'll get an idea as to who is behind the genetics research at Autism Speaks - the OLD NAAR folk - who are now the ASF folk. Katie also speaks to the CAN folk being brought in. Really guys, we need to get behind Autism Speaks. They are not the enemy... ASF (NAAR) is the enemy.

Fair Autism Media

http://autismmedia.org/media15.html

If that doesn't work, google: ffair autism media kirby wright

This is 30 minutes long and a real eye opener about the history of Autism Speaks, NAAR and CAN. I've only watched the first 30 minutes (there is a total of 2 hours).

It is also on you tube (all 2 hours).

[hendersonwood]

This is why we need Autism Speaks (AS). AS has done a fabulous job of being a "big tent", trying to hear every voice. I cannot imagine - as we are such a diverse and vocal crowd.

I am a biomed mom of a hugely improved son. BUT, I am married to a research science professor (different field). You can only imagine our conversations re: our n=1 study vs. corroborated mainstream studies.

AS is looking at everything, bringing all players to the table, coordinating research/a­ctivism/ou­r voice. I cannot be more thrilled that the Autism Treatment Network has been expanded to more universities (one of MANY AS initiatives). We need that research to change physicians perspectives and for future families to pursue medical options (insured too).

THIS is what I think the creation of the ASF really is about, not about vaccines. It is about research dollars being diverted from the 100% genetics/p­sychiatric camp to the scientists pursuing medical treatments (e.g., John Hopkins). THEY (the 100% genetic/be­havioural) have had 60+ years of research dollars (careers, grad students). The "pie" from NIH/etc., THEY'VE owned it forever... THEY cannot lose a single piece of pie to the "medical" camp (any trigger/au­toimmune/o­xidative stress/mito camp/etc).

THEY are cloaking this as "anti-vaccine" vs. "pro-vaccine". We are NOT anti-vaccine, just pro-studying all sorts of environmental triggers, medical indicators & interventions.

[Hydra8]

The billions of dollars of investment trying to prove a genetic cause or environmental cause of autism would have had far more effect before vaccinating as per the current schedule -this is an after thought of science. Research should have taken these two factors into the equation before mandating the toxic loads in vaccines -of course we are ALL genetically pre-disposed to the damage because the toxins have such a great negative effect especially on the under developed immune system of babies.

[Christie Buchovecky]

Kim, I'm sorry, but you completely misrepresented the article on Jones' statement about genetics (found here:http://www.telegraph.co.uk/scienceandtechnology/science/sciencenews/5190914/Genetic-magic-bullet-cures-have-proven-a-false-dawn.html)

What he's saying is that it has not proven to be a magic bullet, because many things are caused by multiple genes, as well as a gene-environment interaction. Furthermore, he is drawing attention to a real debate occurring among geneticists - Not whether genetics research is futile, but whether an approach to it, known as the GWAS (Genome-Wide Association Study) is the best way forward.

[Kim Stagliano - Huffpost Blogger]

Christie - I think we agree - it's hard to say everything in a pithy brief HuffPost. My point is that there are many researchers who only want to look at genetics for autism. I don't think genetics research is futile at all. In fact, my girls have had many genetics tests themselves.

However, with autism, there's been a real bias against biochemica­l/biologic­al research - without even touching on vaccines. Autism, because it is labeled as a psychiatric behavioral diagnosis (299.0 Other Psychoses in the DSM) has been excluded from the medical world for far too long. Genetics only is not going to help the countless thousand of people affected. And there's the real fear of the "Down Syndrome" cure too in many parts of the autism world - both "curebies" and "neurodiversities."


Thanks for commenting. Hope you had the great weather we got in CT today. 92! Spring???

Kim

[autismnostrum]

Really? http://scholar.google.com/scholar?q=autism+medication&hl=en&lr=&btnG=Search

Seems like there's a lot of research into medical treatments and quite a few clinical trials. What's generally missing from my perspective is mainstream scientific acceptance of DAN treatments. And, well, there's a reason for that.

[Natasa]

according to Singer, she recently said something along the lines of "we don't need to look at vaccines, it is a dead end.... better to research other factors that could be involved in autism, like VIRUSES (!)..."

She really did say that. In her little narrow mind the question of viruses being inseparably linked to vaccines obviously never popped up...

if anyone ever meets her please pass on this link ;) http://autismcalciumchannelopathy.com/HIV_and_Autism.html

... whereas severity of autistic symptoms in hiv infected children are directly correlated to viral load. and lo and behold vaccinations (immune stressors/antigen exposure) directly INCREASE HIV VIRAL LOAD. Science is loud and clear. if this is happening with hiv, why not other viruses then?

[hendersonwood]

Natasa - How on earth did you find that site? I never would have found it. VERY INTERESTING.

[fontanerooo]

Kim,
As always great article. The OJ reference was spot on. I really appreciate the humor in your articles because this stuff is so disgusting that sometimes you just have to laugh to keep from crying. As a co-founder of a nonprofit that is actually recognized by the IRS and actually treats kids w/ autism with a mission of helping them reach their full potential I can't imagine what their pitches to their donors will be. "We will find the cause as long as long it is not environmental" or "if you aren't with us you are against us." Good luck to the three stooges they will need it.

[Ergon]

It 's sad that the pro vaccination crowd don't have anything new to say, except to attack those who disagree with them. It's a pity that all their factoids about 'herd immunity' and the safety of vaccines are speculative at best, and outright falsehoods, most of the time. They trust a science that hasn't even found a cause for Autism.
I'm a physician who found conventional medicine useless in treating my own children with autism. I treated them using a combination of unconventional treatments, and they improved tremendously. My articles and research papers were published in various journals and other doctors have confirmed the findings. If you look at the various Dickerman and other Autism blogs you'll find many of my comments where I tried to educate people. I'm semi-retired, and am definitely not trolling for patients, but as a parent, just wanted to share information and direction. But I'm not up to arguing with obstructionists, so maybe this isn't the right place.

[Lindy Smith]

Well said, Ergon!! Thank you for your post! I am relieved to know that there are people just like you around. A physician with common sense! Use what works, not what is pushed upon us by the AAP amongst others.
Peace!!!

[Ergon]

Thanks, Lindy. I'm just a little concerned about the manner in which this debate is being presented here and the relative ease with which pro-vaccinators are being allowed to drown out other voices with white noise while some of my own posts were deleted.

[mikies]

Change comes from the bottom up, never from the top down. I don't expect AAP, CDC, or media outlets to change. They are too invested in the status quo. An open mind in medicine is a rare commodity, but we've already learned that. Until then we have the whole AoA group of people speaking the truths and more importantly asking the right questions and demanding answers. Kim, your writing is "spot on". Thanks for inspiring all of us to do what we can to bring about change.

[gemaddict]

This intense focus into the vaccine/autism causation has hijacked the entire autism community into drowning out the NEEDED focus on the medical, therapeutic and financial need that children, adults, and families of ASD desperately need. Your column did no help to either advance the vaccine causes autism link, or debunk it.

DO something with your pulpit.

Autism Speaks DOES NOT SPEAK for me, a mom with a child of autism.

http://www.autisticadvocacy.org/modules/smartsection/category.php?categoryid=8

The Autistic Self-Advocacy Network (ASAN) is a non-profit organization run by and for autistic people. ASAN's supporters include autistic adults and youth, those with other distinct neurological types and neurotypical family members, professionals, educators and friends.

Their belief?

Autism Speaks is an organization that, while well-intentioned, is focused on genetic research to eliminate the autism spectrum, not efforts to improve the lives of those on it. Furthermore, in the pursuit of that goal, the organization has engaged in many offensive and inappropriate tactics that have greatly offended adults on the autism spectrum. Through its fundraising campaigns, Autism Speaks uses disease-oriented imagery that work to spread fear.

[gemaddict]

I came off really harsh, and apologize for my tone.

[Kim Stagliano - Huffpost Blogger]

Gemaddict, don't worry! Comments bring out our passion.

As much as there are groups who think we "curebies" are against people with autism, we categorically are NOT. The folks who'd let children languish in illness and pre-verbal silence may well be, though.

Autism Speaks has been rather vanilla on the topic and in fact, excludes voices from the autism community. Maybe people with autism don't have enough money to donate? ;) (See I can be harsh too!)

In fact, today we have a post at the site I run (Age of Autism dot com) by Sondra Williams, a Mom, wife, writer and person with Autism about her experience on Risperdal - the drug psychiatrists like Eric London are so quick to prescribe. We also have a Contributing Editor named Jake Crosby who is a college student with Aspergers. And a man in New Zealand by the name of David Greer has just started commenting in his unique cadence/style and syntax.

Wanting your child to function well is every parents' dream and right, is it not?

Thanks for your comment. KIM

[DrMink]

You were not harsh. Your opinion is just as important as anyones. It is unfortunate that no amount of evidence will likely every be enough to convince many people that there is no link between vaccines and autism. This is unfortunate because it has wasted valuable time and resources in trying to better understand how to improve the lives of children and adults with ASD.

[foe2Hg]

You missed the point here. Whatever you think about Autism Speaks, this piece is not about them. It is about The Autism Science Foundation and its mission statement that basically says that will do nothing for the current sick children or in preventing more sick children (ie Autistic).

Your ideas, which differ from mine, are wildly off base. We are discussing medical issues of children injured by vaccines. Kim's piece is bringing to light those who deny yet profit from that denial. The obscene manner in which they haughtily have begun The Autism Science Foundation speaks volumes.

[Patrik]

I prefer Generation Rescue as Autism Speaks has always only looked at parents as the cause.
Whereas only vaccines are strong enough to cause mutations in this short of a period of time, AS seems blinded to the fact that over-vaccination has actually caused genetic damage after generations of use combined with lesser potent environmental toxins.
AS's mission in finally looking at vaccines this year is to put parents worries to rest so that they will gain parental trust in the recommended vaccine schedule.
Just my opinion- I prefer G.R.- it's a trust thing.
Only vaccines can cause this much damage overnight.

[Patrik]

Gem,

We need to focus intensely on the cause of autism as knowing the cause guarantees treatment and prevention.

Those with autism have been neglected by medicine for just that reason. They claim they don't know what causes it so they claim they don't know how to treat it. It is extremely sad when your kid is sick and his medical doctor says medicine will not help and refers you to have him psychologically examined in 2 years as there is a huge waiting list.

Then we find out from Parents that our children CAN and are treated for physical malfunctions that greatly improve their lives if not recover from some of the major symptoms like seizures.

It saddens me that these children suffer without treatment.

[RimlandFanWA]

now hold on Kim- Jello 1-2-3 was in the 1970's :) (so was Mr Wiggle jello, with flavors like rootin tootin raspberry).

NAAR was/is a front for University based/CDC funded fake studies. For instance, the UW autism center admits autism regression is real, (and it took a multimillion dollar study to PROVE that?) , but refused to assist or even cooperate with UW toxicology studies conducted across the street that were looking to see if mercury, and more specifically thimerosal played a part. Burbacher is an honest researcher, funded by NIH for 15 years before his study showed thimeroal caused more damage than methyl mercury.

NAAR Fundraisers always centered around main speakers discussing looking for the elusive autism gene.

Singer, when at Autism Speaks, received $168K the first year- in 2006. Wonder what her salary is now?

Offit got $46 million for his rotovirus vaccine royalties. Goodness knows what London is bringing in.

Wonder when Fonbonne will join them?

Predictable, predictable, predictable.....

[Chantal Sicile-Kira - Huffpost Blogger]

Kim,

There's an old French saying "Plus ca change, plus c'est la meme chose." I know your French is good, so you know it is "The more things change the more they stay the same." That's why we need people like you out there flapping your mouth about this stuff, and I and other parents of young adults will keep flapping our mouths about what is adult life for these guys. We are all creating the future with our children by keeping our mouths flapping and the ideas coming and then acting on them. I'm not waiting for other people to change the future.

Here's to the future - and to nothing staying the same except the mouths flapping! Hopefully we can be flapping about more fun stuff instead of the same old, same old!

Thanks for all you do.

[AutismInAlabama]

Great column Kim!!!! Thank you to you and anyone else willing to speak out on this subject.