I'm not sure what to make of Ms. Singer, truth be told. It'll be interesting if she publicly comments on that old video and her part in it. Until then I'll give a nod to this action but have caution with the person. That's a pretty big blot to ignore without a clear change in direction from it, and this 'curious incident' is nothing of the sort. I'm not even sure it's that much of a personal change on outlook for her.

I can't help but think that Autism Speaks is making a marketing choice. As savvy at PR and fund raising as Autism Speaks is I'd be extremely surprised if they aren't looking at survey data of where their money is coming from, the views of people weighted by the cash, and seeing an anti-vax stance as historically a significant slice. They could be trying to straddle the fence, not wanting to alienate the anti-vax folks until that stream of money starts seriously drying up.

In the same vein it is possible that Singer hears the winds of change blowing and, not having millions of current donation revenue at stake, can move faster. I hear those winds, a lack of 'vaccine' posts here isn't the only one.


P.S.  Singer leaving isn't exactly surprising, this has been brewing semi-publicly. Which is to say planned. Perhaps for timing.


<i>For future reference Kristina I posted occasionally on AutismVox as Tyler...because that's an old Blogspot account I have. This is my real name. Hope you are enjoying your new home here. I'm going to check back through the posts. I do find your retelling of Charlie’s escapades engaging. :) </i>

"A comment was recently left on this blog asking why there is only one post about vaccines. I responded that this autism blog here at Change.org is about autism, not vaccines."

I'd like to second Vincent Precht, and say thanks for that as well.

This article makes simple the vaccine link to Autism...Why Don't the Amish Have Autistic Children?Autism is a difficult disorder to miss, as it is characterized by noticeably abnormal or impaired development in social interaction and communication and a markedly restricted array of activities and interests. And while scientific consensus claims autism has been around for millennia at generally the same prevalence, that prevalence is now considered to be one in every 166 children born in the United States. Therefore, with this devastating statistic in mind, one reporter set out to analyze the autism rates among Amish communities. Why? Because perhaps searching for autistic Amish children would reveal clues to the cause of autism ... and it did. The Clues Come TogetherSince they have been cut off for hundreds of years from American culture and scientific progress, the Amish may have had less exposure to some new factor triggering autism in the rest of population. The likely culprit: vaccines.Traveling to the heart of Pennsylvania Dutch country in search of autistic Amish children, the reporter, based on national statistics, should have found as many as 200 children with autism in the community -- instead, he found only three, the oldest age 9 or 10:The first autistic Amish child was a girl who had been brought over from China, adopted by one family only to be given up after becoming overwhelmed by her autism, and then re-adopted by an Amish Mennonite family. (China, India and Indonesia are among countries moving fast to mass-vaccination programs.) The second autistic Amish child definitely had received a vaccination and developed autism shortly thereafter. The reporter was unable to determine the vaccination status of the third child.Dangerous Effects of ThimerosalIn some vaccines, they use a mercury-based preservative called thimerosal that keeps multiple-dose vials from becoming contaminated by repeated needle sticks. After health officials became concerned about the amount of mercury infants and children were receiving through thimerosal-tainted vaccines, the toxin was phased out of U.S. vaccines starting in 1999. However, due to mislabeling and other problems, its presence is still being felt, and more and more children are suffering because of it. Washington Times April 18, 2005 Washington Times April 19, 2005© Copyright 2008 Dr. Joseph Mercolahttp://articles.mercola.com/sites/articles/archive/
2005/05/04/amish-autism-part-one.aspx

I would think a level headed honest and thoughtful person like yourself Kristina would have welcomed an unbiased fair final researched resolution for this question. To encourage public input for two years then slap it down seems slimy. They asked for our input. We gave it. The public voted Kristina. 6 out of 6 public members stand in request for the requested verbage. (Officially it will go on record as 5 out of 6 because Alison highjacked the Autism Speaks vote. They are very much on the record now with a strong opinion.) I am certain this discussion will continue. 

As I understand it from what I heard at the Nov. 21st IACC meeting, there was a fair amount of public input requesting that the IACC not focus on the issue of vaccines, and address the need for supports and services.

>> I would think a level headed honest and thoughtful person like yourself Kristina would have welcomed an unbiased fair final researched resolution for this question.

That's already happened. *shrug* The realization was likely made:
1) the only real purpose would be trying to convince holdouts among the public that this was the case
2) that it was throwing good money after bad trying convince people that were ignoring the evidence already there by yet another piece of research for the pile
3) explaination and education of the public was a better route to that ends, and in fact them doing this reseach would only serve to undermine and cast doubt on perfectly solid research
4) since that it has been established that vaccination is NOT an autism issue, it becomes a general public health issue in regards to infectious diseasies, it is outside their scope to deal with that

Poor-to-negative return on a limited resource mean "axe" is the correct choice. Time to move forward.

I'd like to add a "me three" to not turning this very fine blog into a constant discussion of then non-link between vaccines and autism.I am very glad that Ms. Singer stepped down.  Since my two daughters were diagnosed with autism 7 years ago, I have been a supporter of Autism Speaks (formerly NAAR) and have been dismayed by the turn toward anti-science.  NAAR/Autism Speaks used to be one of our family's biggest charities but I did not give them any money this past year because of this nagging feeling I was getting about their policies toward vaccine-autism research.I can only hope that Geraldine Dawson, a great autism researcher whom I really admire, will step down also as Chief Science Officer.

Although numerous large-scale studies throughout the world have proved that vaccines do not cause autism, the fact remains that many parents have seen their children plunge into irreversible regression following a vaccine-related fever. Their observations should not be disregarded.

It is possible some children have damaged heat-shock proteins that would make them susceptible to neurological damage during the prolonged high fever that occasionally results from vaccination. If this were the case, then vaccines, per se, would not be responsible for the changes but rather fevers associated with vaccines.

In my article, "Questions about Prenatal Ultrasound and the Alarming Increase in Autism," I suggest that the thermal effects of ultrasound at critical stages of development potentially damage heat shock proteins, leaving young children at risk during their first thermal episode, which is often a fever.

Although I do not agree with all that the Interagency Autism Coordinating Committee (IACC) has done in its attempt to address this urgent public health issue, I believe both the IACC and Ms. Singer are on the right track in looking beyond vaccines for the cause of autism.

Amen, Kristina! The community wastes so much time with the vaccination issue, and the reality is, after early intervention techniques there is very little effective therapy available out there, very little discussion on what to do once your child is included in the mainstream classroom... I'd like to see more advocacy and studies about educational and treatment opportunities for the school age kids.
It's sad when I see my local autism community so intensively devoted to the biomed side of the issue, but when I ask a question regarding schools and education, the feedback I get is dismal. 

Based on what I have heard from following the IACC meetings, there has been regular discussion of the topic of vaccines; the presence of Lyn Redwood of Safe Minds as a public member has quite assured this.  But sometimes it seems that there is an insatiable need to keep returning any discussion about autism back to vaccines and to causes; no matter how much the IACC might say about vaccines, I suspect it will not be enough.

Regarding the Amish - From Lisa Jo Rudy's blog on About.comDo the Amish Vaccinate? Indeed they do AND their autism rates may be lower. (I apologize for posting the whole article - normally I just try and give a blurb and then a link - but I've heard this controversy before and I thought the facts raised in this needed to be shared.
Wednesday April 23, 2008
I just read, for the umpteenth time, a statement that "the Amish don't vaccinate, and that's why there are no Amish people with autism." This statement draws, in part, from claims by Age of Autism writer Dan Olmsted - and, at least in this case, Mr. Olmsted is wrong.I got my first inkling that this myth was, in fact, a myth, when I read this piece in theCombatting Autism from Within website:The idea that the Amish do not vaccinate their children is untrue,” says Dr. Kevin Strauss, MD, a pediatrician at the CSC. “We run a weekly vaccination clinic and it’s very busy.” He says Amish vaccinations rates are lower than the general population’s, but younger Amish are more likely to be vaccinated than older generations.Strauss also sees plenty of Amish children showing symptoms of autism. “Autism isn’t a diagnosis - it’s a description of behavior. We see autistic behaviors along with seizure disorders or mental retardation or a genetic disorder, where the autism is part of a more complicated clinical spectrum.” Fragile X syndrome and Retts is also common among the clinic’s patients.Strauss said the clinic treats “syndromic autism”, where autism as part of a more complicated clinical spectrum that can include mental retardation, chromosomal abnormalities, unusual facial features, and short stature, as well as Fragile X syndrome. “We see quite a few Amish children with Fragile X,” he said....Strauss says he doesn’t see “idiopathic autism” at the clinic, which he defines as children with average or above average IQs who display autistic behavior. “My personal experience is we don’t see a lot of Amish children with idiopathic autism. It doesn’t mean they don’t exist, only that we aren’t seeing them at the clinic.”He says a child in the general population is more likely to have autism detected early and to receive a diagnosis than an Amish child. “Amish child may not be referred to an MD or psychologist because the child is managed in the community, where they have special teachers,” he says. “We know autism when we see it, but we don’t go actively into the Amish community and screen for ASD.”Strauss adds that the Amish have a high prevalence of genetic risk factors and are protected from others. The low rate of idiopathic autism “might have more to do what genetic structure of population than lifestyle, environment or diet.”Just to check for myself, I called Strauss's clinic and chatted with a community liaison named Rebecca. Rebecca, who grew up among the Amish, confirms that about 70% of the Amish in Lancaster County do, indeed, vaccinate. She also confirms that the rate of autism seems to be lower among the Amish than among the general population. Of course, she didn't have a true explanation for this, though she said:There's more of an acceptance [among the Amish] of people for being what they are, as they are. We certainly have children with difficulty learning - and there are special education facilities for children who have Downs, MR, and other issues. Most families have many children, a high rate of communication, no television; and it's important to be able to read. Communication is very, very important. I guess I have wondered whether the autism out there is due to lack of personal attention and communication to that child.I found Rebecca's insights intriguing. To my mind, they argue for the notion that at least some of the huge rise in autism diagnoses may be linked as much to culture as to symptoms. What's more, in recent months I've come to realize that a great many of the therapies developed for autism really have just one thing in common: when done correctly, they involve a great deal of high quality 1:1 communication with the child.The Amish do vaccinate. But in other ways they live very differently from the rest of us. I can't help but wonder whether they have a great deal to teach us relative to our children with autism.

Newsweek's Claudia Kalb interviews Singer.

http://www.newsweek.com/id/179998/page/1


From the end of the interview:

[Newsweek]In an interview in 2006, you said, "I am planning to stay at Autism Speaks until the day we find a cure." Now what?[Singer] Now I'll revise that to say I plan to stay in autism advocacy. I plan to take all the energy and passion that I committed to Autism Speaks and apply it elsewhere in the autism advocacy community. I'm certainly not going to be leaving. If anything, I hope to be more vocal.[Newsweek] Will you become more vocal on the vaccine issue specifically?
[Singer] I think by talking to you today I already have.

From the Newsweek Singer article: "Here's another story. A few weeks ago, Jodie went to the pediatrician. She had Tdap [tetanus-diptheria-pertussis] vaccine, a flu shot and a vaccine against meningitis. The next day her teacher remarked to me that Jodie was much more attentive and participated in class much more than usual. Her gym teacher said that for the fist time Jodie was able to compete in an obstacle course. Should I start pontificating that vaccines are a great treatment for autism? Of course not, that's not science. That's called coincidence."
This was a kick for me to read because last year the two days following Meghan's most recent vaccination were some of her most productive as well. She was calmer and more focused. Her teacher commented on it to me and I remember my husband and I joking that we should start a "Vaccines help autism" movement. 
I do think Singer's point is well made and bears repeating. Coincidence is not science.  And all joking aside, we would never seriously believe that there was any type of connection between her vaccination and her behavior, for the simple fact that Meghan has good days and she has bad days and she has middle of the road days. Meghan may have autism, but she is first and foremost a human being. Just like everybody else. I think we get so caught up in the autism label sometimes that we forget that a cigar can be just a cigar. Sometimes Meghan behaves the way she does because she's 5 years old. It's hard to make that distinction - how much of what she's doing is because of her autism and how much is because of her age. Do others have that problem? Do others see a distinction? 

I've definitely been thinking of this.  Charlie often sits in a slumped-down pose, head in his hands and looking down, and no inclination to budge.

It's exactly the same post that some of my, ahem, students (the guys----college freshmen) assume in class, their legs too long for the metal desks, their backpacks somewhere on the floor in disarray..........

Kev Leitch at Left Brain/Right Brain reports on the public comments for IACC requests for information------and finds that "the majority of people who are interested in autism aren’t interested in vaccine research."


http://leftbrainrightbrain.co.uk/?p=1797#respond

Kev Leitch at Left Brain/Right Brain reports on the public comments for IACC requests for information------and finds that "the majority of people who are interested in autism aren’t interested in vaccine research."


http://leftbrainrightbrain.co.uk/?p=1797#respond

I just found out that a friend has learned that her unborn child most likely has Trisomy 18. Her child will either die in utero or shortly after birth. 
Puts life in perspective. There are far worse things than autism, no matter the severity, at least in my book.
If you are convinced vaccines are dangerous, if you are so scared of disability, if you truly feel that you could not handle the responsibility of an autistic child or ANY special needs child then there is only one truly responsible, caring act you can do - don't have children. That really is the only way you can insure that you will have no child with a disability. 
Personally, my husband and I feel the reward is worth the risk. 

It is hard for me to believe someone with a child who already has autism goes ahead and lets that child have another multi-pathogen vaccine? That was 5 pathogens at once! I don't think much of our health scientists. By the time our scientists have been in academic environments for years, they approach science with blinders on because of the heightened focus they are forced to assume the further they go in academic research. It is like the picture of a vase, when you look at it out of the corner of your eye to get another view you see 2 womens' profiles instead of the vase. I see only alternative doctors who treat with supplements, herbs, and diets mostly but they also use some drugs. Whenever science has tried to duplicate the alternative doctors successes with supplements, they, of course, use a single nutrient and that nutrient is always a chemically created nutrient, not a natural one that comes with all of the other components of that nutrient. For instance, Vitamin E is not just  D-alpha tocopherol. Vitamin E is made up of 5 tocopherols and even more tocotrienols. Not one of them is d-alpha tocopherol, which is the man-made alpha tocopherol. And you don't take just one nutrient. Supplements need each other. You never take one nutrient for a problem because the human body doesn't work like that. So no wonder they have never had any success in repeating the use of one supplement. They are not doing it the same way at all. But try telling any of them that and you are talking to a blank wall. They just don't get it. So why should I believe that the testing they have done with vaccines is any better! I spent 15 years being mis-diagnosed and treated like a guinea pigs with drug after drug being tried on me. When I was finally diagnosed correctly, by an alternative MD., most of the drugs that were used on me were recognized as making my health MUCH WORSE! Just because the Scientific community keeps saying vaccines are not the problem does not mean it is so. AND, children keep getting these multi-dose vaccines and they keep getting sick right after receiving them. So I am not convinced. Recently, some of these alternative doctors have been testing and treating children with autism for LYME disease and they are curing them of the Autism. Just search on youtube.com for lyme +autism and you will come up with some videos about this. Lyme disease is another HIV-like epidemic that is waiting to happen which the scientific community refuses to recognize as a problem. They think it can be cured with one dose of antibiotics. That is impossible because the Lyme bug is a shape-shifter. It can change itself into 4 different forms, which gives it the ability to travel and hide ANY place in the body. Besides that, when you get bitten by ANY insect who passes you a pathogen you don't just get one pathogen from them. You get every pathogen that insect has. So people with Lyme don't just get one pathogen, they get many, There is no antibiotic drug that can kill more than one type of pathogen, so of course one antibiotic is not going to get rid of the lyme disease with 4 types of lyme bugs and numerous pathogens. But the doctors and scientists are doing the same thing with Lyme they are doing with Autism. At least autism kids get treated. Lyme patients don't even get treated because insurance refuses to pay for it because it isn't recognized by the medical community. They just keep getting sick until it kills them.

I think Singer did the right thing, in her IACC vote and in parting ways with Autism Speaks.
That said, I think the *real* problem is how the media -- and the big autism organizations, Autism Speaks included -- continue to portray autism as universal horror and tragedy. Playing the pity-and-fear cards, in publicity campaigns, has a high price: it drives needlessly terrified parents into the arms of the proliferating autism quackery industry.
The message we need to get out about autism is that it does not *have* to be horror and tragedy. More and more autistic kids -- given learning and growing environments that work *with* them rather than against them -- are achieving better and better outcomes. *With the right supports*, they will achieve better and better quality of life as adults. But in order to get them there, we need to refocus away from the endless wars over causation and the endless search for miracle "cures", and *onto* laying the groundwork for supporting them in housing, education, employment, healthcare, and living in the community as consumer and citizen. Those 1 in 150 kids are going to be the adults of the next two decades. The time to shift gears and act on this bigger imperative is *now*.
-- Phil Schwarz
Autism National Committee
Asperger's Association of New England
Massachusetts Chapter, Autism Society of America

Thank you so much for this. I am absolutely disgusted that no discussion of autism can take place, it seems, without devolving into an argument on the vaccine debate. How very sad and discouraging for those of us just trying to do our best to live and let live under what can be incredibly trying circumstances.

Five pathogens at once! The horror. Amazing....ly tiny compared to the number of pathogens that assails us on a daily basis. Seriously, if we're going to start quantifying based on pathogens, that dog won't hunt.

Wilma, that entire paragraph is scary. Lyme gets treated. There are specialty doctors for Lyme. And it's not a "dose" of antibiotic but long-term, very effective treatment after which people feel great. There are some finely sensitive tests for Lyme and even more sensitive ones are becoming more widely available.

Your paragraph is riddled with misinformation, but this one really takes it: "There is no antibiotic drug that can kill more than one type of pathogen." Sheer nonsense. Please don't go around spreading this kind of misinformation. The United States is already woefully behind enough as it is in math and science.

And Phil, of course. It'd be nice to rise above the madding crowd and move forward. And actually, just in the last year or so, I've noticed that the news media are improving in their coverage and terminology. Why, I do believe I've read even a few pieces that mention "autism" without namedropping the "V" word even once, and that would have been unheard of even a year ago. So, progress, in more ways than one.

Not a bad project to attempt in the new year----coverage about autism and not vaccine bait-and-switch.

There are two important avenues of autism investigation: 1) how to best assist autistic individuals and their families; and 2) discovering what is causing autism. Each is of equal importance and each requires funding, creative thinking and unflagging efforts. To ignore either one is to do a great disservice to our society as a whole, as we need to provide for the least able among us while also striving to discover what is causing the increase in children on the spectrum.

As someone living with an autistic child, figuring out "best practices" to ensure that my son has the best possible education and services and supports, and staff are trained in how to teach and assist him, is paramount. 
I do not think my son, who most consider "classically autistic," would have been diagnosed with autism in a previous generation.

 Did the IACC put out is Strategig Plan or did I miss it some were.
maybe sme one could held find it on the web!

 I went back and looked up the IACC and what got me was the amount of time they gave the public to give public comments.

I did not see any thing to say they were gong to do a study onthe water we drink the has fluoride in it. We know that fluoride has lead and asrenic that will acumulate with in the boby.

 Witch how you get lead poison witch can kill you a lott of plumbers died when they had th solder all the pipes in old days,  
so why could not the mother acumulate in her body and pass it on to her child and harm the baby. just an adea and maybe why have a very high infant death rate also. But no one seems to care. This could also count for a high austim  prevalencein the noth to the south where the two may use differnce in the amount of fluoride in the water. In the south they use less and they only have1 in 412  in NM to 1 in 97 in NJ and 1 in 81 in MN.

AS for the amist it may be that PA does not use fluoride in a great dell of the state.

Dr. Chew said:  "And, too, do the stated reasons for Singer's resignation from Autism Speaks indicate that this organization, which has quickly made itself into a very large organization with affiliates in a number of countries, is wavering in its commitment to science?"

Actually, there is quite a bit of science that supports the connection between vaccines and autism.

And, Bob and Suzanne Wright (founders of Autism Speaks)  appear to be seeing that their grandson, Christian, was harmed by vaccines and is benefiting from DAN! biomedical treatments.  Their daughter Katie Wright (Christian's mother) is convinced of this.  Read Katie's introduction to the book "Changing the Course of Autism - A Scientific Approach for Parents and Physicians" by Bryan Jepson, M.D.  And read the rest of the book, too.

A few years ago Autism Speaks merged with the group National Alliance for Autism Research (NAAR), which focuses solely on the genetic and brain aspects of autism.  Even though Katie Wright believes in the newer biomedical paradigm of autism, and her parents appear to have grown in that direction as well, the scientific NAAR-based board of Autism Speaks has been stubbornly insistent on the old-fashioned purely gene/brain paradigm of autism.

To me, it is very exciting that Alison Singer and Autism Speaks have parted ways.  If the largest autism organization in the world is turning towards the biomedical paradigm of autism, that is a good thing.

The biomedical paradigm of autism IS supported by science.  Autism is not only about genes and the brain.  Autism involves inflammation of the brain caused by environmental insults, including vaccines.  Autism involves the whole body -- immune system, gastrointestinal system, and the body's metabolic and chemical processes.

 I myself would not take the study by the CDC at face as they are the one who stated this latest round of autism in 1992-93 when they told 4200 pws to add man made fluoride [lead and arsenic] to the water.

In 1990 the rate was 1 2500 and that rate went to 1 in 150 by 1999 when almost all pws were put on line.

As we know the first autism was diagnosed in 1943 when there was very few pws that put fluoride in the water. By 1990 there was about 50 cities  with fluroide. Then 1992-93 the cdc up graded to the 4100 more pws to put the fluoride in the water and then things went wild.  It also seemed to effected the infant  mortality rate. But you don"t seem to hear about that  which put us 35th on the list fo infant mortality out of 103 nations.
 

This is mainly to Donald, but also to everyone who wants to be enlightened.

Dutch Association for Conscientious Vaccination
Independant Vaccine Study
Roosendaal, 1 December 2004

http://www.vaccination.inoz.com/Vacc%20vs%20unvacc%20results%20survey.pdf

We need totally unbiased participants such as parents of Autistic children or adults. No one on evaluation panel can be associated with vaccine mfg. or related group.All participants must be screened just as was in Dutch Association for Conscientious Vaccination  study.
Or, just visit their Home page at:

http://www.vaccination.inoz.com/

Here is a link I found that is very informative for anyone with children, especially newborns. It can help guide your vaccination decisions. It shows you where our country is heading unless we all get involved in how our government runs, i.e, by the people. We can make it happen.

NVIC [ National Vaccine Information Center ]
http://www.909shot.com/
----------------------------------------------------
Also a couple of sayings from our nations founders:

"If tyranny and oppression come to this land, it will be in the guise of fighting a foreign enemy."
-James Madison

"America will never be destroyed from the outside. If we falter and lose our freedoms, it will be because we destroyed ourselves."
-Abraham Lincoln