1. Health

Discuss in my forum

New Autism Science Foundation's Mission- No Vaccine-Related Research

By April 22, 2009

A few months ago Alison Singer made news when she abruptly resigned as Executive Vice President of Autism Speaks, the largest non-profit in the world dedicated to autism-related research and programs. Singer resigned when she disagreed with Autism Speaks' decision to fund and advocate for vaccine-related research.

Now Singer, who feels strongly that autism is genetic in origin, has founded her own non-profit. Interestingly, she is joined by Karen London, a co-founder of the National Alliance for Autism Research (NAAR) - an organization that was among the first to merge with Autism Speaks.

In a press release, The Autism Science Foundation said their mission is premised on the following facts and principles:

Autism is known to have a strong genetic component. Research must aim to discover the mechanisms of action that trigger autism, as well as safe, effective and novel treatments to enhance the quality of life for children and adults currently affected.

Early diagnosis and early intervention are critical to helping people with autism reach their potential, but educational, vocational and support services must be applied across the lifespan. Science has a critical role to play in creating evidence-based, effective lifespan interventions.

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 to ensure vaccine safety and maintain confidence in the national vaccine program, but further investment of limited autism research dollars is not warranted at this time.

Naturally, Singer and London have every right - and many reasons - to form their own non-profit, and to specifically refute the idea that vaccines may be related to the rise in autism diagnoses. They'll probably be successful in recruiting celebrities, developing a board, and doing precisely what they intend to do - at least, as well as anyone can in this economy.

But there's no doubt that Singer and London - and their perspectives - will also find themselves at the center of a firestorm of criticism from those who are absolutely certain that vaccines are the primary cause of autism. Others will take their side, and battles will ensue. In fact, many such battles are already beginning around the blogosphere.

While it's always a good thing to see additional funding for science related to autism, I can't help but wonder whether the creation of an organization that is specifically "anti-Autism Speaks" will be a positive thing for the autism community overall. The autism wars are heated - and in many ways, the creation of the Autism Science Foundation could be likened to tossing a cup of gasoline on an huge, crackling bonfire.

Comments
April 22, 2009 at 12:59 pm
(1) Harold L Doherty says:

“The autism wars are heated – and in many ways, the creation of the Autism Science Foundation could be likened to tossing a cup of gasoline on an huge, crackling bonfire. ”

I think that is true. I also question whether this organization will do much more than espouse the oft repeated opinions of Dr. Paul Offit.

I am not convinced either way in terms of the effects of vaccines, and vaccine ingredients, but I do not accept the “science has determined that vaccines do not cause or trigger autism” assertion. The epidemiological studies to date are not a complete answer by any means to this issue. And some far more learned people than me have said that more research (not the same old epidemiological studies) has to be done.

April 22, 2009 at 1:12 pm
(2) Bill says:

I think this is wonderful. There is research that I would like to see done; just last week research came out connecting cortisol levels with Asperger’s. Unfortunately, the apophrenic association between autism and vaccine has caused real harm, real deaths to children of gullible parents. Donating money to organizations which contributed to ant-vaccine hysteria would have left blood on my hands, so donating money to these organizations became unconscionable. An organization which would restrict research to pure research which defines how my Asperger’s brain and my Asperger’s genes are different than those of neurotypicals is a step in the right direction.
Traditional pharmacology experimented with compounds in hope they would cure things, a tradition going back to shamans and witch doctors. Modern pharmacology learns how our metabolism works at a cellular level, a molecular level, and then tailors a molecule to correct the problem, a method which produces better results and fewer side effects. We need the same approach with autism/asperger’s; truly understanding what is going on at a cellular, molecular and genetic level, and then, if there is an identifiable deficit, it can be specifically targeted. I doubt very much if any environmental factor is ever involved, but I respect that it is possible that something environmental is involved. Proper research could ease our real fears of environmental triggers.
I doubt that autism/asperger’s can be “cured”, since it is impossible to “rewire” a brain, just as it is impossible to repair a spinal cord. However, if for instance, taking a pill which affected my cortisol level at just the right time of day would help my alertness or my nervousness, it would be welcome. Perhaps the right combination of analogues to natural hormones would stop the depression so many people with Asperger’s develop. These are easily identifiable goals, cause no one collateral damage, and while not “curing” anything, would provide relief.
Right now drug relief is anecdotal, without good research to back up what really helps. The drug which most helps my quality of life, the common blood pressure medicine, atenolol/ternormin (a beta blocker), I discovered entirely by accident when I was prescribed it for blood pressure. (Beta Blockers block the effect of adrenaline, and help with the nervous trembling- I take 50 mg twice a day). I shouldn’t have had to discover this by accident. People with adrenaline problems shouldn’t be getting pharmacological advice online. We need an organization which categorizes the conditions which have autistic behavior as a symptom, and direct each group toward the best treatment for their specific diagnosis. Then hand the medical community guides to the best pharmacology. My doctor doesn’t have a clue how my physiology differs from anyone else’s.

April 22, 2009 at 3:25 pm
(3) LAB says:

@ LJR

So we should continue to fund research into the discredited autism/vaccine link simply to keep the peace? Thankfully, Alison Singer did not share this view.

I do not agree that the ASF is a “cup of gasoline” on the “cracking bonfire” of the autism/vaccine wars. The ASF is, in fact, a bucket of cold water on that fire.

April 22, 2009 at 8:28 pm
(4) Lisa says:

LAB – I think it’s possible to fund autism research into any area you choose without specifically stating that you are NOT going fund vaccine-related research because it is NOT relevant.

By making that point a major platform for the foundation, yes, I think that Singer is quite deliberately fanning the flames, tossing gas on the bonfire, etc.

That’s no reflection on her choice of research focus, but rather a comment on her choice of how to present and publicize what she is planning to do.

Lisa

April 22, 2009 at 9:23 pm
(5) Aurora says:

Bill, thanks for your comments…very informative.

April 22, 2009 at 9:55 pm
(6) Sandy says:

I often wonder why, when some one wants to fund some thing different than another’s idea of what should be funded, that there would have to be a flame or war (flame war, get it?) over it. It portrays almost a threat to other’s when different studies are to be funded than those that are related to vaccines, as if there’s a fear they may actually find more than just a link. If people want to donate to any cause, it’s their money so let them donate than to argue where they donate to.

There has to be some genetics related to autism, or there would be equal genders with autism. May be once that genetic factor is found, the vaccine factor can be proved.

It’s too bad that people have to be so critical of such Foundations. One of those Foundations could be the one who actually contributes to finding the last puzzle piece.

April 23, 2009 at 8:54 am
(7) LAB says:

“I think itís possible to fund autism research into any area you choose without specifically stating that you are NOT going fund vaccine-related research because it is NOT relevant.”

But the point is that this research has already been done and the conclusions have already been drawn. I’m sure you know Einstein’s definition of insanity: doing the same thing over and over again and expecting different results. I assume those who give money to research organizations don’t want their good money thrown after bad. We don’t have to keep going along with the loudest voices in the crowd–Jenny McCarthy’s, for example–simply because we’re afraid of upsetting people or “fanning flames.”

I think Alison Singer is smart to put the vaccine issue upfront. I would never donate money to a quack autism org. I want to know what kind of research is being done, and how it will be funded and reported. I’m tired of this drone: “I know [chelation or B12 shots or probiotics or whatever] is recovering my child from autism, because I’m a mom and I know. I don’t care what the scientists say, and I think peer review is meaningless.” Somebody from the inside has needed to stand up against this nonsense, and this is what Alison Singer has done by forming the Autism Science Foundation.

[note: could you please delete #4 above? my comment accidentally posted twice for some reason].

April 23, 2009 at 6:58 pm
(8) Jeanette says:

I had the great pleasure of meeting Dr. London and Karen London at a benefit for NAAR in 1998.
They are passionate and compassionate. They are also the parent’s to an autistic child.
We were just getting our 3rd diagnosis and had only 4 children at the time.
They were looking heavily into the genetic side at that time.
I am thrilled they are taking the spotlight off of Jenny and the AoA crew….
We have had enough of them.

April 24, 2009 at 7:55 pm
(9) Olivia says:

Hi Lisa,
You wrote: I can’t help but wonder whether the creation of an organization that is specifically “anti-Autism Speaks” will be a positive thing for the autism community overall.

I’m not sure I understand. How is the Autism Science Foundation “anti-Autism Speaks?” It’s not as if Autism Speaks funds a lot of vaccine research. There are few qualified scientists who even write grants for vaccine-autism research, let alone get funding. Can you explain your comment? Is there something Autism Science Foundation has said that makes it seem anti-Autism Speaks?

April 26, 2009 at 5:28 pm
(10) AutismNewsBeat says:

I was wondering the same thing. Does that make the National Academy of Sciences “anti-Discovery Institute”?

Researchers are already leaving AS for the ASF, so obviously there is a for an evidence-based advocacy group. Anti-vaccine activists have managed, with the help of a credulous media, to hijack the discussion over autism, and Singer is pushing back. That’s great news for people with autism, and for the silent majority of autism parents who don’t buy into the nonsense peddled by Generation Rescue and other fringe groups.

April 26, 2009 at 7:46 pm
(11) Lisa says:

Singer left Autism sm Speaks very publically and mades the point that she did so over the issue of vaccine research. Then she started a new org with the specific goal of NOT doing vaccine-related researh. Obviously, she is making a point – with which you can agree or not. But of course she is creating a “not Autism Speaks” research org!

Lisa

April 26, 2009 at 11:14 pm
(12) AutismNewsBeat says:

That’s a very narrow and shallow interpretation of the ASF’s mission. Singer is offering an alternative to researchers and parents who are tired of seeing valuable resources wasted on a long-discredited hypothesis.

April 28, 2009 at 3:50 pm
(13) Shelly says:

Thank you Alison Singer for starting a new foundation to research the cause of autism. As the parent of a 23 year-old son with autism, I totally support your view that genetics is where the focus in research should be. It is time the debate about the role that vaccines play with autism specturm disorders stop. Too much time and money has been wasted. It is time to move forward!

April 30, 2009 at 2:10 pm
(14) Erik Nanstiel says:

What fun it would be if their new foundation started erecting booths at the major biomedical conferences (DAN!, Autism One, NAA, USAAA). Talk about fireworks!

I don’t trust someone who just got a $104Mil payday for developing a vaccine… to be an authority on vaccine safety and autism.

Offit’s involvement SCREAMS industry bias in their research. It might as well be called the “Tobacco Science Foundation!”

May 1, 2009 at 9:33 pm
(15) AutismNewsBeat says:

FAIR enough, Erik. So let’s talk about Dr. Ayoub’s research instead. Are you still working with the man who thinks the World Health Organization uses vaccines to sterilize poor women in third world countries?

http://vodpod.com/watch/1408012-mercury-autism-and-the-global-vaccine-agenda

How’s his research coming?

May 4, 2009 at 10:56 am
(16) Bernard Windham says:

There is overwhelming documentation that vaccines/toxic metals are the most important factor in large numbers of cases of autism, ADHD, Asperger’s, eczema, etc. Both peer-reviewed studies and huge amounts of clinical case documentation
http://www.flcv.com/kidshg.html
http://www.flcv.com/autismgc.html
http://www.autism.com/treatable/form34qr.htm
etc. Large numbers of autism treatment clinics have confirmed this survey of many thousands of parents that chelation is the most effective treatment.
There is no credible evidence indicating that brain inflammation, autism, ADHD, etc. is not caused by vaccines/toxic metals. My organization has experience with thousands of cases of successful treatment by detox. As do large numbers of other organizations and clinics.

May 4, 2009 at 10:59 am
(17) Bernard Windham says:
May 12, 2009 at 8:39 am
(18) Maggie Dressler says:

I think the reason parents, my own daughter included, are falling prey to the vaccine theory, is that for too long there have been no proven reasons offered as a cause of autism, and vaccines provide something to blame.

I have two Children and two grandchildren with Autism and have participated in genetic testing for this affliction. So far no common gene was found in their (Mt. Sinai) testing.

My 28 yr old severely autistic son was vaccinated, albeit did not receive as many vaccines as children today do. My younger son’s vaccines were delayed until he waa a year old because of other health problems, yet he still developed Autism/Aspergers. My grandaughter did not receive her first vaccines until well over a year and after already exhibiting autistic behavior. Her brother had his vaccines more or less on time and has ASD. I have a nephew who refused to have his baby vaccinated at all, and his child still developed autism.

It does not elude me that, having so many children in one family with Autism supports a genetic link to the disorder. We also originate in Hudson County NJ which was one of the first clusters of Autism back in the 80s.

I’ve also noticed that back in the 80s when my first son was diagnosed, nearly every child in his school had severe symptoms. My younger son and grandchildren have far less severe symptoms, yet all had quality early intervention.

I am not a scientist, but after years of pondering this and seeing the frightening rise in the incidence of Autism, I truly believe it is an evolutionary or adaptive process brought on by a genetic disposition which may be triggered by local environmental factors, not vaccines.

Leave a Comment

Line and paragraph breaks are automatic. Some HTML allowed: <a href="" title="">, <b>, <i>, <strike>

©2014 About.com. All rights reserved.

We comply with the HONcode standard
for trustworthy health
information: verify here.