The Awful Truth About Autism Speaks
"It is a leech upon the autism community, sucking resources and walk-a-thon energy away from cash-strapped families struggling to cope. If there was any value in its "awareness" campaign, it has been achieved; AS has no apparent further reason for being."
By Dan Olmsted
It's been quite a while now since I went on record saying that the best thing Autism Speaks could do for the autism community was to disband, so I can't really pretend to be surprised by anything they do.
Still, you have to draw a deep sharp breath when this is the statement from Geri Dawson, chief scientist, following last week's IOM whitewash of vaccine safety problems: "The IOM report is consistent with Autism Speaks’ policy statement on vaccines. Given the present state of the science, the proven benefits of vaccinating a child to protect them against serious diseases outweigh the hypothesized risk that vaccinations might cause autism."
This blanket endorsement of the current vaccine program is completely irresponsible. Why? For three reasons.
One, as I wrote right after the IOM report, vaccines do cause autism. Yes, the MMR causes autism. Yes, vaccine mercury causes autism. Yes, multiple vaccines too soon and too close together cause autism. They are the main driver of the autism epidemic. Dawson ought to take a long weekend and read followingvaccinations.com in which more than 900 parents stand up, by name, and describe what happened to their children.
Second, this link is more than merely hypothesized. There's Hannah Poling, Bailey Banks, the 83 children in the Unanswered Questions report. There's the Stony Brook study that shows three times as many boys who are vaccinated with the mercury-containing Hep B at birth develop autism than those who are not. There's the whole history of vaccination, and particularly the use of mercury, that tracks with the rise of autism and other awful conditions. (See our book, "The Age of Autism -- Mercury, Medicine, and a Man-Made Epidemic"). There's Andy Wakefield's brave work, which of course Autism Speaks is too cowardly to get anywhere near, and all the subsequent research that confirms it.
Actually, given the "present state of the science," a group like AS should be counseling caution, condemning idiot vaccines like Hep B and chickenpox, and criticizing the mad growth of vaccine mandates. The present pathetic state of the science is partly Autism Speaks' fault as it continues to pour money down the gene rat hole.
Third, Autism Speaks is The Man's favorite autism org, preaching treacle and hogging the spotlight while doing nothing useful and letting the epidemic roll on. It is a leech upon the autism community, sucking resources and walk-a-thon energy away from cash-strapped families struggling to cope. If there was any value in its "awareness" campaign, it has been achieved; AS has no apparent further reason for being. It's delaying progress, deflecting attention from the truth. It's job, like any other business (or malignancy), is to grow. As Boyd Haley said of another such entity, "Bureaucracies don't have a heart or a soul, but they do have a survival instinct." AS is in survival mode and it will swat down or swallow anyone or anything that threatens it.
Sickening, really. As a friend said, "I think it does show AS's true colors, and this should be pointed out so that at least people in our community are not confused about what AS really stands for."
Do us all a favor, Autism Speaks. Shut up, shut down and go away.
Dan Olmsted is Editor of Age of Autism.
The only gift was the highly intelligent child who was born. Autism is the trashing of that gift using vaccines.
Posted by: Grace Green | May 24, 2019 at 09:37 AM
I always feel bad for the parents who are given false hope by them to always look at autism as a gift. For any parents knee deep in the anguish, pain and suffering (particularly markedly notably caused by vaccinations) the true gift of a beautiful soul is broken. That's not a gift, that's the wizardry of the evil organization overtaking taking credit for ruining our lives.
Posted by: not good organization | May 23, 2019 at 06:24 PM
I am currently working with a neurosurgeon in Mexico who has had significant success with autism patients (significant, as in 70% to 85% success rate). The age of the child, however, does make a marked difference. For example, his greatest success is with children 8 years old and younger with a top age of 12 years. The doctor cites underdeveloped parts of the brain as the cause and utilizes therapies to foster growth in these areas.
One theory contends that we are dealing with a virus that is triggered by factors including toxicity from vaccine components as well as external environmental poisons. Biochemical individuality can account for the differences in children as do genetic factors.
The politics of our health care "system" are such that corporate financial interests trump our desire to seek greater health for our children.
Posted by: Dr. Christopher Vogelmann | February 12, 2018 at 11:59 AM
This is what I posted on their facebook page after reading their statement.....Geri Dawson, chief scientist, following last week's IOM whitewash of vaccine safety problems: "The IOM report is consistent with Autism Speaks’ policy statement on vaccines. Given the present state of the science, the proven benefits of vaccinating a child to protect them against serious diseases outweigh the hypothesized risk that vaccinations might cause autism." Are you kidding me? Why would you say that? You know better. I walked for AS and donated heavily to AS but never again. Do the rest of the austism community a favor and keep your rediculous spoutings to yourself.
Posted by: Kathie | April 23, 2014 at 07:35 PM
And as if it weren't bad enough that they continue to deny environmental factors/vaccines as the cause of the autism epidemic, they also are a categorical failure in that they do virtually nothing to spread the word regarding treatment and the possibility of recovery. They are in the position to give even greater validity to the obvious fact that autism is a multi-factoral disease that should be treated.
So we know they are do nothing to find the cause and nothing to promote the cure/recovery. So as you say.....What exactly is their purpose?
Posted by: Pamela | April 03, 2012 at 09:19 AM
I am a mom of two children one on the spectrum and the other not. I do and wil continue going on Autism sites to find new information that may help me with my own sons. I say sons because I think autism don't just affect one person
it affects us as a family.If I had a problem with this site I would simply delete it and not return to it, that would be the adult thing to do.
Posted by: Brenda | October 18, 2011 at 11:00 PM
Mary E. Tormey,
I think you meant to direct your comment to Phillip, not to me. I am not a fan of Autism Speaks either. The word "blue" in my name refers to feeling blue - sad about what that organization stands for and how it wastes money that could improve lives.
Posted by: Blue about Autism Speaks | September 07, 2011 at 03:28 PM
Blue About Autism Speaks, Please tell me your name. I would like to start a "charity" and collect money in you name then I can slander you and manipulate people to donate money out of fear. I will pay my friends to do research that involves testing drugs on you and turning you into a human pin cushion. As long as I do not force you to donate money personally that is OK with you right?
Posted by: Mary E Tormey | September 04, 2011 at 11:05 PM
I think this should have been called "One of the Many Awful Truths About Autism Speaks".
Posted by: Mary E Tormey | September 04, 2011 at 10:54 PM
Hi, Mary. We've written extensively about Autism Speaks over the last few years. Some praise, some finger pointing, some disgust. Katie Wright has probably written the most about As for AofA. I suggest you use the "search" box on the left and type in Autism Speaks to find many of those articles. Thanks. KIM
Posted by: Managing Editor | September 04, 2011 at 07:18 PM
I feel like this story is incomplete. If you want to tell"The Awful Truth About Autism Speaks" Then you should mention:
How they spend, money on lobbying and paying people with ties to the pharmaceutical industry.
How they dehumanize the Autistic population by implying they do not feel empathy.
How they collect money to do "research" what exactly does that mean? Is that like dissecting a frog to see how it's anatomy works?
How they claim to speak for a population that loudly and repeatedly asks them to "shut up".
Posted by: Mary E Tormey | September 04, 2011 at 06:40 PM
If you're dedicated to helping people with autism, then I have no doubt you want to see this devastating disorder prevented.
And if I'm reading your comment correctly, it sounds like you agree with Generation Rescue that there is a link between vaccines and the autism epidemic.
Therefore, you must be in favor of protecting infants' and toddlers' developing immune systems and brains from an assault of vaccines that could permanently harm them.
Chief Science Officer of Autism Speaks Geraldline Dawson is in direct opposition to reducing, minimizing or testing for susceptibility to all these vaccines now pushed by pharma. She has very openly stated that children should get the full CDC schedule of vaccines, and she doesn't exclude children in autism families who are most likely to be in the "susceptible subset" to vaccine harm.
You don't want us to be "argumentative" even though children's brains are in peril? Why on earth not? Do you think everyone holding hands and singing Kumbaya is going to prevent a 3-hour-old infant from seizing and having his brain permanently damaged after being jabbed with an unnecessary Hep B shot?
Perhaps you're so close to the people you work with that you haven't stepped back and looked at the big picture and seen that something very frightening is happening to a generation of children. One in six has a neurological disorder. This is not normal.
Sorry you don't like my "argumentative behavior." Here's the behavior I dont like - collecting $70 million dollars on behalf of children like mine, spending $15 million of it on payroll, setting up shop in a fancy office in midtown Manhattan, and publicizing the "benefits outweigh the risks" of the current vaccine schedule when exactly the opposite has been shown to be true.
And by the way, Autism Speaks has not been "successful with their mission." To quote one well-known autism mom, "Autism Speaks has cured as many children with autism as I have."
Posted by: Blue About Autism Speaks | September 02, 2011 at 08:04 PM
Joe Harris, you are preaching to the choir.
Posted by: Theresa O | September 02, 2011 at 07:25 PM
Here's one for Tereasa O If you stop putting poison in children you will stop having poisoned children.
And as far as the person that likes the The brain research.
I am referring to is the scientific data relating to functional MRI scans of the autism brain. The 3 areas
are the amygdala, the hippocamus and the corpus callosum. The amygdala.
Here is a clue, of of the damage being found in the brain.
On the Thimerosal MSDS sheet it states that Thimerosal is accumulative in the body,and it targets the organs of the body..(now here is where you need to pay close attention)
The MSDS goes on to say; [in particular the Brain and the
lining around the Brain].
They are just finding the damage in the Brain that the Manufacturer admitted it caused.
Posted by: Joe Harris | September 02, 2011 at 05:32 PM
It is just this type of argumentative behavior that I am talking about. I do stand corrected and should have said that Generation Rescue is at the forefront of vaccine awareness, with an emphasis on a relation of vaccine intensity and ingredients in creating this epidemic contributing to the increase of autism in our society.
Autism Speaks has raised awareness and funding for research like no other entity I have seen to date. Don't hate on them for being succesful with their "mission".
The brain research I am referring to is the scientific data relating to functional MRI scans of the autism brain. The 3 areas are the amygdala, the hippocamus and the corpus callosum. The amygdala is the emotional center, the hippocamus is for memory and the corpus callosum is the nerve center that connects left and right brains. If you can grasp how these work for indivduals on the spectrum, you can develop your programming to fit to the autism percpetion of the world.
"I wonder who or what you represent. You sure don't sound like someone with a family member affected by autism."
Are you being serious with this comment? Should it matter that I am a parent or not to have an opinion? No I am not a parent, but I am a guardian to a 25 year old male, non verbal individual on the autism spectrum. His sensory issues are "off the chain". He is 6'1 and 190 pounds of a bull in china shop at any doctor appointment. Next week he gets to go the dentist for some major work, and I will handle it. I have known him since he was 8 years old.
I have also been the guardian of a 15 year old male with Aspergers who is also diagnosed as deaf. I been working with indivduals with autism for over 30 years, I do not believe that I have seen it all and continue to educate myself daily. I have watche countless kids grow into adults.
I had an interesting conversation in 1994 at an autism conference. This lady told me in no uncertain terms and I quote "You try everything, you keep what works and you get rid of what doesn't". She told me this while I was trying out her squeeze machine during a exhibitors break. That lady was Temple Grandin.
The number of families I have worked with over the years is in the hundreds, newly diagnosed all the way up to a 90 year old man with Aspergers. I have been in their homes, their schools and their communities.
So don't sit there and pass judgement on me or anyone else for their opinion here. It is this type of rhetoric that has no place in the autism community.
Generation Rescue and Autism Speaks have their places within this community, along with thousands of others. Pick the ones you support and leave it at that.
I gave my opinion, so live with.
Posted by: Phillip | September 02, 2011 at 04:34 AM
If you think Generation Rescue is "the no-vaccine lobby," then you're ignorant of the most basic facts. Maybe you should read through the GR website before commenting on the organization.
What exactly is the "latest brain research" that you suggest to "apply to your individual with autism"?
I wonder who or what you represent. You sure don't sound like someone with a family member affected by autism.
Posted by: Blue About Autism Speaks | September 01, 2011 at 10:47 PM
If you don't like what Autism Speaks is representing, don't donate too it. In my opinion Autism Speaks is moving in the right direction with funding scientific research and lobbying for the autism population.
Generation Resuce the also popular no vaccine lobby has made some great strides in identifying issues with vaccine safety. If you don't belive in their message, don't donate to it.
The facts are that autism is on the rise. Research the effective methods, study the latest scientific brain research and apply what is best for your individual on the spectrum.
Bashing one side or the other is waisting time, get on with helping those on the spectrum.
Posted by: Phillip | September 01, 2011 at 12:39 PM
And John Stone--
Of course, I'm not going to run out and tell all my friends to get their kids the MMR today. Even if I believed that it doesn't cause autism, I wouldn't be too keen on encephalitis, seizures, or anaphylaxis... and I don't think the risk or measles, mumps, or rubella to a healthy child with access to modern medical care justifies the MMR.
All I meant was that if AS wanted to parrot the IOM, they should have stuck to commenting on MMR. They have no basis at all for making a comment about any other vaccine. It makes one wonder why they do it.
Posted by: Theresa O | August 31, 2011 at 05:32 PM
Thanks for the link, Martin. I'm never one to get excited about studies whose outcome seems to be confirmation of a particular aspect of ASDs, e.g., "sure enough, kids on the spectrum *do* have trouble processing auditory inputs," but your site did include at least one treatment study that piqued my interest (http://www.iancommunity.org/galleries/research-studies-pdf/SR00300_Pineda.pdf - the one about improving functional connectivity through a particular type of rehab).
I'm also hopeful that we'll hear more about the research in which John Elder Robison is participating.
Your remark in your initial post ("Do something productive") really rubbed me the wrong way, but I have come around a bit: I think that every time we post a negative piece about AS, we could also mention a better place to direct friends to send their donations. If someone asks us to do an AS walk-a-thon, we shouldn't just dump all over AS; we should also tell them about a place that we think deserves our walk-a-thon dollars instead (TACA, Mason Medlam Foundation, etc.).
I still think, of course, that Dan (and the rest of us) are entitled to our ire over AS making statements about the safety of all vaccines with respect to autism, given the absolute paucity of data on the subject. However, maybe it's best not to dignify their BS with our commentary.
Posted by: Theresa O | August 31, 2011 at 05:27 PM
Followup to Teresa O.
The link below is for one organization I belong to. In fact, my kids, their mother and I participate in some of the research studies listed.
Look into it please.
The time spent in long rants to the choir could be spent providing informational clues to a true "smart scientist" who is dedicating their life to unraveling the molecular etiology of ASDs.
Posted by: Martin | August 31, 2011 at 04:05 PM
And, of course, it has not been shown - whatwever the IOM says - that MMR does not cause autism, as 'Opinion' pointed out below. That is just a bureaucratic position, and I am sure that's what you are saying, but it has to be spelt out too.
Posted by: John Stone | August 31, 2011 at 03:49 PM
Martin, I'm still not sure what you mean about the political pressure. Do you mean that a state representative could make public statements about AS that would make AS spend its money in a better way? I guess that's possible.
As for organizations worthy of donations, feel free to post! I know Kent has blogged a few times about the Whittemore-Peterson Institute and its work with XMRV. I, for one, would love to see more research done on XMRV and its possible role in human diseases. I'm not very connected to the world of laboratory research, so any information on what is being studied would be welcome.
I still don't think the AS statement about vaccine safety with respect to autism is merited by the IOM review, and here's why: AS didn't limit itself to MMR. The IOM did not find enough studies to draw any conclusions about the bulk of the vaccines on the American immunization schedule, so the most that AS could say would be that the benefits of the MMR vaccine outweigh any possible risk of autism. Many might disagree, given the Bailey Banks and Hannah Poling cases, but AS would be on somewhat firm ground to make a statement about MMR alone, given the IOM's conclusions. The fact remains that a comparative study of the health of vaccinated and unvaccinated populations has not been done, so AS really shouldn't make any statements about the link (or lack of a link) between any autism and any vaccine other than MMR.
It's kind of like when people say, "Mandatory vaccination is important, so polio doesn't come back." No, the only vaccination that would be important to polio not coming back would be the polio vaccine. Ending universal varicella vaccination would not play any role in bringing polio back. Nor does the IOM statement about MMR not being linked to autism have anything to do with Varivax, Gardasil, the hepatitis B shot, or any vaccination other than MMR.
I really don't think it's possible to see that point any other way. Nothing has been proven, according to the IOM, about the role any vaccine other than MMR may play in autism. I don't know why AS feels the need to make a stronger statement than the IOM does.
Posted by: Theresa O | August 31, 2011 at 03:34 PM
Teresa O followup.
Thanks for the tip. However, I am not a "smart scientist"; actually I'm a pretty mediocre scientist. I do feel passionately about my children, and want to help prevent ASD in all kids.
Political pressure may generate unfavorable publicity which could result in a decrease in donations to a non-profit organization. What better way to counter such a scenario than by generating positive publicity (see for example the Hereditary Disease Foundation, or the Alzheimer's Association) with funded research studies?
Sponsored research of academic labs by outside organizations is done on a very regular basis. Forty thousand dollars to a top laboratory would get the services of a good postdoc for a year. Easily.
The conclusion that, in the specific case of the MMR vaccine, the benefits of vaccination outweigh the risks is perfectly valid. There was no mention of other compounding issues or complexities.
As for the followup, 4000 people donating $20 each would be excellent! If you'd like, I'll look for such an organization and will post it here.
Posted by: Martin | August 31, 2011 at 03:10 PM
(follow-up to Martin)... actually, the amount left for salary for a postdoc (or anyone) from $40,000 is probably more like $15,000. I usually double a salary to figure what it costs a company to hire a person, but in double-checking that assumption, I found this calculation online (http://web.mit.edu/e-club/hadzima/how-much-does-an-employee-cost.html) that indicates that a person's actual cost can be as much as 2.7 times his salary... turning the $40,000 donation into not quite $15,000 of pay for the postdoc. I guess you'd need about 4000 donors to fork over $20 each in order to cover the average postdoc's salary in the US--and that's assuming that a researcher is going to accept donations from the general public, as Martin describes. I don't think I've ever heard of such a thing happening.
Posted by: Theresa O | August 31, 2011 at 02:18 PM
OK, Martin, I'll take the bait:
(1) The IOM review found sufficient evidence to reject a causal link between MMR and autism. That's it. No other vaccines; not MMR in conjunction with other vaccines; just MMR on its own. Therefore, the statement from AS that "the proven benefits of vaccinating a child to protect them against serious diseases outweigh the hypothesized risk that vaccinations might cause autism" is a huge stretch. Dan is right to find it objectionable.
(2) Hiring a postdoc for $20 x 2000 donors? I'd love to see the postdoc who will work for $20,000 (minus the cost of benefits). Last year, typical postdoc salaries were between $37,000 and $52,000 (http://classic.the-scientist.com/blog/display/57381/).
(3) How, exactly, would my state politician tell a non-governmental non-profit like AS how to spend its money?
...and here's a tip: "I pour over details..." should be written "I pore over details..." (http://mw1.m-w.com/dictionary/pore). If we're supposed to listen to you because you're such a smart scientist, you might pick up a dictionary before you post.
Posted by: Theresa O | August 31, 2011 at 01:49 PM
There have been multiple meta analyses of every well-controlled study that has looked at the correlation of vaccines and ASDs.
There is no causation evident.
As a father with a child on the spectrum, I want to find the thing that causes autism. Don't you?
As a PhD scientist (22 years) in all things biochemistry, I look carefully at the individual studies, and carefully at the large studies. I pour over details of the bigger studies that pool together the information of smaller ones. There is no causation evident.
I respect the correlations noted, and the suggestive laboratory studies in model systems. But these are only clues. The real answer is MUCH more complicated than aluminum or mercury exposure.
It irritates me that so much energy is spent on the same issue, over and over, ad nauseum. Why not put all that energy into help finding the set of conditions in our kids that result in autism?
Why not send a $20 bill to a good research scientist with a well-thought idea about one of the other factors that contribute to ASD? That won't go far, but if 2000 people did it, that scientist could hire a postdoc to work on that idea.
Or get your state politician involved in getting AS to put more of their non-profit money into solid research studies.
Do something productive.
Posted by: Martin | August 31, 2011 at 12:43 PM
Scott, I really appreciate your commenting here. We need to listen to all the sincere voices. But, I have to tell you Scott, that I too was once a naive American who thought that scientists were staying up late at night trying to solve medical problems and the instant they found an answr it would be translated into action. Twelve years of studying the progress of autism has shown me something very different. Let me give you a few examplesof modern "Science":
It has been known for maybe 30 years or more that aluminium in the brain is probably connected to Alzheimers Disease. It has been known since about 1996 that both mercury and aluminium are in high levels in the brains of AD sufferers. So , would you not imagine Scott that your CDC scientists, who love the population so very much would be telling us to avoid mercury and aluminium ? Well, sorry, we cant use that kind of science because we have mercury and aluminium in the vaccines that we give every year to unsuspecting Americans.
Another one: In 2004 some very good scientists at U California Davis found that mercury of the type found in flu vaccines would cause damage to the immune system in even extremely small quantities. What does that tell us? Maybe that we should not put mercury in flu vaccines? or put those little kids who get flu vaccines into a protective bubble for a month or two? No, thats just more inconvenient science, so we shall ignore it.
No , my friend, even if some enthusiastic scientist is working intelligently and diligently to find the cause of autism, that does not imply that his findings will automatically see application in the real world.
Taking care of the autistic kids is certainly laudable, but to take part in covering up the truth, resulting in more children all around the world becomming autistic , is something that some of us cant bear to watch
Posted by: Cherry Sperlin Misra | August 30, 2011 at 02:38 PM
A leech? Come on. How about calling Autism Speaks one of those spaceman black holes? The kind that sucks in entire universes?
I recently transferred browser favorites from one program to another. I culled through all the old URL links just to see which ones are still active (worth keeping).
It's amazing how so many Autism activists suddenly vaporized. They're all gone.
Probably the most obvious was autismfacts.com. The extremely well-produced Thimerosal time line, which has a beginning in the late 1800s, stops like the day the earth stood still at:
December 11, 2006
* President Bush is presented with the passed Combating Autism Act and it awaits his signature to put the Bill into law.
Take a look at the old Evidence of Harm yahoo list. Now at EOH? All the Autism activists/posters are vaporized. They're all gone.
I was excited, recently, to look at the in-box and once again see that I was part of one of those "undisclosed recipients" E-mails, the kind where fifty Autism parent/activists are sharing their thoughts about the best way to move forward. It was just a computer virus.
The E-mails from fellow parents of vaccine-injured kids have vaporized. They're all gone.
I guess there are two ways to look at this. People are brown-nosers and have a sixth sense for smelling money or Autism Speaks spread like cancer making formerly fearless folks simple little cyber-marxists re-educated into drug company rock-breakers.
Autism Speaks was designed to enable the United States Centers for Disease Control to money launder excessive amounts of tax dollars to CDC anti-litigation bloc Autism researchers.
Autism Speaks chummed millions and millions of dollars looking for the best expert witnesses money could buy to testify against innocent children harmed by vaccines.
Autism Speaks was designed to divide and conquer all opposition to mainstream ideals and encourage lots and lots of covert experimental research by vaccine/drug companies.
Posted by: Kerboblog | August 30, 2011 at 10:53 AM
Wow, Theresa O. I loved your comment. Couldn't agree more.
Posted by: timeforchange | August 30, 2011 at 10:43 AM
Autism Speaks' salaries are nearly double the industry average for non-profits. http://www.careerbliss.com/salary/autism-speaks-salaries-722883/
Their ratings are lousy. Just 1 star out of 4 for efficiency. http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=12720
But who cares? They're brilliant at raising money.
It's hard to believe the same Geraldine Dawson who wrote the statements below just a few years ago is now pimping for pharma.
1. “In the past several years, the prevalence of ASD has increased dramatically, underscoring the potential role of environmental factors in its etiology.”
2. “Recent studies point to a key role of the immune system in the biology of ASD, raising questions about the effects of the significant immune challenges associated with vaccinations, particularly when delivered in combination and early in life.”
3. “We believe that the question of whether immunization is associated with an increased risk for ASD is of extremely high priority.”
4. “Still other studies point toward subgroups of children with ASD with genetic vulnerabilities than can amplify the adverse effects of environmental exposures, including vaccinations, on brain development and function”
5. “There is a need to describe the nature and prevalence of vaccine adverse events in children with metabolic disorders and assess risk factors for these events.”
6. “As mentioned in the draft scientific agenda, many key questions have not yet been adequately addressed. Many of the studies to date have relied on data from the Vaccine Adverse Effects Reporting System (VAERS). While this system has clear strengths such as its broad coverage, it nevertheless has substantial limitations (Ellenberg and Braun, Drug Safety, 2002). Because the system relies on passive self‐report, a major limitation is under‐ reporting such that only a small fraction of adverse events are reported. Furthermore, events that occur weeks following vaccination are less likely to be reported than those that are proximal to the vaccination.”
7. “Many fundamental questions have not been addressed, such as whether the use of combination vaccines confers increased risk for adverse events and whether there are subgroups in the general population that are more vulnerable to serious adverse effects of vaccines, including ASD.”
8. “Research has shown that children with metabolic disorders, including mitochondrial disorders, may experience neurological decline when physiologically challenged. There have been reports of metabolic crisis after receiving vaccinations”
9. “As noted in the draft agenda, preliminary results from a VSD study underway found that children aged 12‐23 months who received MMRV vaccine were about 2 times more likely to have febrile seizures during the 7‐10 days after vaccination than children who received separate MMR and varicella vaccines at the same visit (CDC MMWR, 2008). In a population‐based study, there has been a report of an increased risk for ASD after infantile seizures during the first year of life”
10. “Studies that can address the current questions raised by parents are feasible. Clinical studies of individuals with ASD can address whether certain metabolic conditions associated with ASD are correlated with increased risk for serious adverse effects. Case‐control studies and randomized clinical trials can be conducted to address whether there are differences in adverse effects associated with a combination vaccine versus individually administered components”
11. “Fever after vaccination is common and can induce seizures in vulnerable children”
12. “For example, a recent study identified mutation in a sodium channel gene in children who developed encephalopathy after pertussis vaccines, suggesting that genetic factors may influence the risk for neurological deterioration after vaccination”
13. “Children with metabolic diseases are at higher risk of health complications from diseases that are prevented by immunizations”
14. “Such research could have wide‐ranging effects on clinical practice/vaccination policy. For example, it could allow pediatricians to identify subgroups of children who may benefit from a different vaccine schedule or for whom careful monitoring of adverse effects is warranted.”
15. “Over the past decade, parental concerns, both in the general population and the autism community, over the possible link between immunization and increased risk for autism spectrum disorders (ASD) have only increased despite concerted and persistent efforts by the medical community to reassure the public about the safety of vaccines.”
16. “It is Autism Speaks’ position that the best way to ensure that parents are confident in the safety of our vaccine program and, at the same time, protect the minority of children who may be at increased risk for serious adverse effects of vaccinations, is to foster collaborative, trusting relationships among the general public, the medical and scientific communities, and the federal government whose mandate it is to conduct research on the safety of vaccines.”
17. “Establishing and maintaining a trusting relationship and providing answers to parents’ questions cannot be achieved by one set of studies addressing one set of questions, but rather it will require an on‐going process of scientific discovery as medical science continues to uncover individual differences that predict differential responses to vaccines and other medical interventions. We need to embrace our obligation to address new questions with an open mind, adequate resources, and renewed commitment.”
Posted by: Autism Speaks, Inc. | August 30, 2011 at 08:47 AM
Thanks for this Dan. I agree with you 100%. When I see unsuspecting, gullible parents like this buying their baloney I just want to cringe. A.S. has done nothing for our kids yet parents continue to follow them like sheep.
Wow Lady, get a clue!
Posted by: Laura | August 30, 2011 at 07:07 AM
On reading this article and 57 comments I have started to picture a campfire in a hollow on a remote mountainside where a group of revolutionaries are furiously confronting a delegation that has tried to compromise with the despots and come back having won a few very modest concessions at the cost of the total subjugation of the tribe.
This situation calls for a revolutionary approach, as compromise is impossible.
Posted by: GH | August 30, 2011 at 06:18 AM
The agenda of Autism Speaks needs to be understood in relation to the further surveillance of populations for the enforcement of medications. If you look at the Godboldo affair or California AB 499 and authoritiarian pharmaceutical politics usurping the family this is now where they are leading. It requires people to empty their heads, to defer, to offer up their lives and their children to pharmaceutical control. While it presently represents a diversion for the autism community we are only just beginning. They want nothing but your intellectual passivity while they persuade the rest of the world that this is where it is at.
Posted by: John Stone | August 30, 2011 at 05:08 AM
Excellent, Dan! Thank you.
There's a Pulitzer Prize with your name on it waiting down the road.
Posted by: Ed Arranga | August 30, 2011 at 12:44 AM
Dadvocate, I'm not sure what you mean about detailed information available below the headline. I'm just saying that as a person *without* an affected child, it's not clear to me from any AS billboard (1) why I should care or (2) what exactly these families need/expect from me. If AS wants me to vote for school board candidates who support additional services, or vote for state legislators who would earmark special education funding or adult services funding for affected individuals, they're going to have to do more than put a three-year-old with no visible impairment on a billboard.
I worked in marketing, too--search ads, specifically--and I know that if you don't grab people's attention and induce them to *click through,* then your marketing budget gets you nowhere. Show a person with a problem. Show a kid who doesn't get ABA because his insurance company won't fund it. Show a young adult who has no access to services because they don't exist. Show a parent who is up all night wondering who will care for her child when she's gone. Show a house with holes kicked in the walls, with no respite care available for either parent.
As I do *not* have an affected child, I cannot comment on anything AS has done regarding insurance coverage. All I can say is that if I didn't already know a whole lot about autism from my adventures on the internet (PubMed, AoA, Thoughtful House, etc.), I wouldn't give those AS billboards a second thought. They don't grab my attention; they don't convey any urgency; they don't tell me what the problem is, except that a lot of kids have something called "autism," which from the billboard, doesn't look that bad. Then I go to a family gathering, hear a 30-year-old in-law who works in special ed talk about how it's "better diagnosing" (this actually happened), and what am I to think? Based on the AS billboard and everything else that's in the media (vaccines are safe, autism has always been with us, it's better diagnosing), I would have no reason for concern or action.
And that's the thing: it's 1 in 100 kids. That means that the majority of families do *not* have an affected child. If you want them to care--to call their legislators, to vote for *their* money to go to *your* problems--you've got to show them something worth caring about. Not a cute kid with a Snoopy backpack who doesn't seem to have any problems--and who, according to the media and a whole lot of my peers, has always been around and is just labeled differently today.
(For everyone other than Dadvocate, please know that I *don't* believe it's just better diagnosing; that I *do* believe that environmental factors, including vaccines, are behind a real and dramatic increase in autism; and that I *do* know that as a nation, we have to address this challenge in real ways, including financially. My point in this post is just to say that the AS ad campaign doesn't tell me any of that. If I hadn't met people in my childbirth class ages ago who talked about thimerosal, Wakefield, chemical exposures, perinatal interventions, etc., who knows what I would think--but I did meet those people, and now my eyes are open.)
Posted by: Theresa O | August 29, 2011 at 11:46 PM
I know very little about Autism Speaks and hear very little about the topic of Autism overseas except on this website and a couple of others.
We[Australians] are very sheltered from the rest of the world when it comes to other countries dealing with the Autism epidemic. Our own Prime Minister has never uttered the word "AUTISM".
You [Americans] are very lucky to keep this topic in the forefront of peoples minds. Over here this topic is kept on the 'backburner' or 'swept under the carpet'.
It is good to see that this article has so many different opinions, thus igniting other debates and raising other questions that need to be considered. And remember:- "Sometimes you need to create a problem to solve a problem".
Also, good on Dan for venting some frustration!
Posted by: AussieMum | August 29, 2011 at 11:04 PM
Thank you Dan, JB you are right on. JEFF, THE TALKING POINTS ARE ALWAYS OBVIOUS. Thank you for pointing them out to new readers. I am so tired of being angry with them. I really wish they could be "put" down. Dadvocate needs to take his AS paycheck and sling his poop somewhere else.
Posted by: Bre | August 29, 2011 at 10:59 PM
To Dadvocate. I am truly sorry to disappoint you on all your baseless speculation as well as for offering up a comment that challenged your abilities in terms of length and content. I will give your suggestion all the consideration it deserves.
Theresa O - I understand and also appreciate that the marketing like billboards is superficial and many parents (me included) sometimes want a more unvarnished approach like the life that exists in my house with a highly impacted young adult. Little adorable kids and cures are far from the whole story but they do sell (I'm in marketing) so I'm ok with that as long as there's detailed info available below the headline. I think there is at AS with the things their family services group is doing on the topics I mentioned. You should take a look. My "axe to grind" with Dan's piece is that when he and others throw bombs instead of agreeing to disagree while pushing their own agenda like crazy, it makes getting leverage consensus and action on issues we all agree on 10 times harder.
JB - you didn't direct a comment my way but I do feel a need to point out that it's really unfair to say any organization has failed to deliver by not doing things that aren't in their mission.
Posted by: Dadvocate | August 29, 2011 at 10:35 PM
Mike Adams reports the real truth at Natural News:
Over the weekend, we unveiled an analysis of the Institute of Medicine's "Vaccine Adverse Reactions" report where the IoM admits that MMR vaccines cause measles, seizures, allergic shock and much more. If you haven't seen that story yet, check it out here:
Continuing with our truth telling about the IoM, today we bring you what might truly be the most important story we've published this year. In it, we expose the IoM's little-known ties to vaccine manufacturers, junk food companies and even Monsanto!
Even more shockingly, we also expose the IoM's ties to the military industrial complex, which gives the IoM untold millions of dollars and then reviews the IoM's reports before they get published.
If you are ready to take the red pill and follow the white rabbit to learn the truth about the Institute of Medicine -- and why its reports on vaccines simply cannot be trusted -- then prepare yourself and read this well-researched article entitled "NaturalNews exposes secret vaccine industry ties and military involvement with Institute of Medicine, reveals fatal conflicts of interest at IoM."
You will never look at vaccines the same way again, and you will not believe how deep this rabbit hole really goes:
Posted by: AutismGrandma | August 29, 2011 at 10:30 PM
Geri Dawson politely declined my sincere proposal for her to evaluate Ben's medical history and be my expert witness in vaccine court. I promised I would present whatever she put forward as her opinion.
Posted by: bensmyson | August 29, 2011 at 09:29 PM
Unfortunately, this article is right on the "money". Cynicism is creeping in, and I am really upset at myself for being this way.
Posted by: My son's advocate | August 29, 2011 at 09:19 PM
At this point, AS is as useful to autism as the CDC. Another big pharma monkey...
Posted by: Anna | August 29, 2011 at 09:01 PM
Geri Dawson handles autism research politics the way Leona Helmsley handled hotel staff.
Posted by: nhokkanen | August 29, 2011 at 08:27 PM
Your popping on here whenever AS gets a well deserved critique is very interesting. You write a dissertation defending them, more than a casual observer would need. I take it you are not a casual observer or commenter but a sort of lobbyist for them -- maybe a shill?
-AS helped with ABA
-AS helped with insurance lobbying
Big deal. Autism is a money ticket for everyone of them, maybe including yourself, so why would they look to really focus on prevention or a cure? It's only political, Dadvocate, when your bread and butter depends on it, eh?
It's really easy to pick studies that dance around the issue. Your coming on here only to protect jobs at AS is really obvious. Dan Olmsted has the right message by saying,
"Autism Speaks is The Man's favorite autism org, preaching treacle and hogging the spotlight while doing nothing useful and letting the epidemic roll on. It is a leech upon the autism community, sucking resources and walk-a-thon energy away from cash-strapped families struggling to cope. If there was any value in its "awareness" campaign, it has been achieved; AS has no apparent further reason for being."
Your ridiculously long rebuttal to that paragraph is just another dance, dazzling only to you. Since you are so fed up with the Truth that is the guts of AOA, I suggest you do pack up your AS paraphernalia. You know, banners, noise makers, confetti, and all that bullshit that you dish out.
Posted by: To Dadvocate | August 29, 2011 at 07:33 PM
Posted by: L Land | August 29, 2011 at 07:02 PM
Well I have to say. I'm with Dan on this. Having 2 possibly 3 vaccine injured children... having autism speaks come out and say, Yeah its ok to vaccinate your children.... NO thats stupid! The more children that are injured or have autism just puts the economy in an even worse situation than we are already in. I myself and my husband who is Blind, are already below poverty level. Its hard enough for us to take care of our children and if they were to cut our benefits we get due to more people applying for their children due to vaccine injuries/autism. That would devistate our already devistating financial issues. So I think this is stupid for them to say... keep vaccinating its ok its safe... whatever autism speaks does need to sit down shut up and break up. It may have been started for a good cause, to bring autism awareness to the community, but dang really?!?! How much money did they get for saying vaccines are safe??
Posted by: Shonda Potter | August 29, 2011 at 06:45 PM
Dadvocate, I only wish AS were pushing for awareness of the issues you cite ("School/Family/Work/Housing/Employment policy and operational issues"). When I see AS-sponsored billboards, they show a kid with a Snoopy backpack and the 1-in-100 stat. That's it. The day they show Kim's daughter's bruises from her school bus monitor, or the bathroom in LJ Goes's house, or the house of the couple who wrote the piece on out-of-home placement here on AoA recently... well, that's the day I'll believe that AS is helping the public have a true awareness of autism.
Posted by: Theresa O | August 29, 2011 at 06:02 PM
I wish AoA had a "like" button for some of these comments!
Posted by: rileysmom | August 29, 2011 at 06:00 PM
We all know that vaccines are the third rail of autism, science, government, pharmaceutical companies - and also it seems of fund raising for Autism Speaks. The days of Suzanne Wright pounding her Manolo Blahnik on the table about looking at vaccination causation are long gone - replaced by cautious tip-toeing last spring by turning down Dr. Oz's program to this current point.
I would venture that a good many AS staffers (especially among the legion of volunteers) have their own personal beliefs and actions regarding full vaccination (as is their right) that differ from the official statement.
Until they themselves speak out, not much will change.
Work toward maintaining personal health care rights - and keep your sleeves rolled up (pardon the vaccine pun) - seems none if us in the autism community will be out of work anytime soon. And that brings no sigh of relief.
Posted by: Stagmom | August 29, 2011 at 05:23 PM
AS is supporting an Autism License Plate in Massachusetts that some parents are trying to push through with a signature collection. I am all for the Autism awareness plate but not if it has the Autism Speaks name on it. I could not help but wonder how much of each plate $$ to register AS is going to collect.
Thank you for saying in a much clearer way what I have been saying for year. Autism Speaks does not speak for me or my family.
Posted by: Lisa B. | August 29, 2011 at 05:21 PM
Thank you, Dan. Well said.
Elizabeth Birt Center for Autism Law and Advocacy
Posted by: Mary Holland | August 29, 2011 at 05:16 PM
The most productive and best thing ever for the "autism community" is for Autism Speaks to just go away! Thank you Dan Olmsted, Kim Stagliano, Mark Blaxill, Ginger Taylor and many many parents I have met through facebook for all you do for us parents.
Posted by: Lindy Smith | August 29, 2011 at 05:03 PM
I was at a meeting a few weeks back and the "Walk for AS" people were there.
They certainly had enough printed materials. It was all for the fund-raising efforts, and I asked if they had a piece of string so I could practice carrying my balloon in circles, as a "team captain" with my group.
As before, the next year they walk in circles in the "opposite direction" to see if they can find any answers that way...
It is sad the organization started by the Wrights do not reflect the wisdom of Katie.
Posted by: cmo | August 29, 2011 at 04:18 PM
Thank you for saying what needed to be said. Autism Speaks should really only have 2 goals:
- Preventing future cases of autism
- Recovering as many children today as possible
They have failed completely at both. Unfortunately, few nonprofits are capable of creating their own irrelevancy. In the case of Autism Speaks, I think the people who lead the organization are more interested in perpetuating their careers than taking risks and solving the problem.
Kudos to you for calling them out,
Posted by: JB Handley | August 29, 2011 at 02:56 PM
I am rereading a book I read a number of years ago. It is about the thalidomide tragedy. It is called "Suffer the Children." It was put together by a group of Sunday Times writers including Harold Evans (before Murdoch took over). I highly recommend reading this book because, even though it doesn't deal with autism, it talks about the role the press was able to play in order to uncover this tragedy. The book has some interesting parallels to the current autism crisis and it might be an eye-opener.
I presume that today's autism crisis can be counter-acted easier by pharma and the media because autism is not an obvious horror but instead invisible to the general population (there are no missing limbs) who, I am afraid does not care nearly enough about how serious autism is.
Posted by: Birgit Calhoun | August 29, 2011 at 02:41 PM
Wow. Obviously, the IOM report hit nerve with Dan (did anyone really expect an about face in their views from this survey of already published studies?) However, I'm very, very disappointed to see Dan join the ranks of bomb throwers and name callers. I didn't know he'd gone on record with this stuff earlier.
I see absolutely nothing new or changed in terms of Autism Speaks already published position on this issue in their (routine and expected) response to a major government report's release.
The AS should "go kill themselves" approach may work (for something?) when preaching to the converted but won't win too many new friends among the undecided or new members of "the club no one wants to join". I just don't get the point of this piece other than angry venting about AS. It's no different than much of the nonsense one reads from some in the "Neurodiverse" community. Ah well, maybe it's progress if some at AoA agree with the ND-er's on at least one thing.
The success of Autism Speaks has a ton to do with the many folks who agree with (in whole or part) and financially support their mission and the research priorities they fund. Personally, I also think their funding genetic stuff is out of whack proportionally but do like a bunch of other things they're writing checks to help do. Dan is free to disagree and oppose their existence but others clearly don't, including people like the many families who are now getting their kid's ABA paid for and aren't going broke because AS hired staff and lobbyists to focus on this issue with donor funds raised nationally. With the help of a lot of other organizations and committed advocates, AS has helped get insurance reform passed in a lot more states than pre-AS, creating momentum for a national policy. I worked with a group who got limited insurance reform passed in my state before AS got involved. We could've done it years earlier (and a lot better) had we been able to tap into the resources they've created today. We would've saved families facing these bills millions of dollars paid out of pocket to hire therapists while we were flailing at the Chamber of Commerce ineffectively for years. This battle is far from over and a lot more needs doing but I guess spending money to help save people millions more doesn't count as helping them in their communities.
As for autism "awareness" being a goal that's been achieved. If only Dan were correct. It's too bad that he isn't. A lot more people today may think they know what the word "autism" means, but when you scratch below the thin surface, their understanding of what the issues facing kids, adults, their families and caregivers actually mean and the supports needed is next to nil. Zero. Nada. All of which translates into no political policy or financial supports locally or on the national level. "Awareness" is a lot more than Dan apparently thinks it is. It's really about helping to educate an entire society and their leadership about how to make the best (or at least minimal) supports, financial and otherwise, available to the people with autism who need them. Some of that is through scientific research initiatives and a whole lot isn't.
School/Family/Work/Housing/Employment policy and operational issues cry out for a thousandfold increase in "awareness" (and education). If people think that's happened already and were all passed that stage apparently don't live on the same planet that I do as an advocate. Sigh.
I read AoA because there are, from time to time, some good pieces and comments about the need to dramatically strengthen the current broken system of checks and balances vis a vis immunization (and public health) policy and research in this country as well as some others work on a wide range of autism issues. It's too bad that those informative pieces seem to be becoming rarer in favor of pieces like this. Perhaps it's time to move on.
Posted by: Dadvocate | August 29, 2011 at 01:59 PM
I noticed how you saved one sentence of my paragraph, then voiced an opinion.
Is that really fair?
Posted by: Renee McAfee | August 29, 2011 at 01:50 PM
Scott, if you have a degree in psychology then you must know that epidemiology is very limited as a science, by ethics and limitations with the study designs. How do you reconcile the fact of people being paid out for vaccine damages and actual listing of side effects on vaccine package inserts with things like encephalitis don't mean that vaccines cause a lot of problems for many people, including autism?? Also, the new CATS twin study shows that genetics don't matter so much and that environment is key in autism causation.
I thank God every day for actually doing some research and not over-vaccinating my son (we don't hep b at birth in Canada) and I only gave him 2 dpt's, one at 3 months and one at ten months and only one MMR somewhere around 2.
Also, like it or not, just because someone is a playboy bunny doesn't mean they don't have a brain.
You sound very sexist.
If they're so confident about the vaccines, why don't they do a vaccinated VS unvaccinated study or
even better, do what Hewitson did and give monkeys the vaccines and study the biological changes
that occur ( brain inflammation, etc.)
Posted by: Jen | August 29, 2011 at 01:11 PM
Nice list Steve. Folks like Scott are not serious participants in this discussion. They are pushing talking points meant to marginalize those that question the current vaccine schedule. They are not interested in research, studies, or our stories, but in protecting the schedule at all costs. You can see them coming a mile away as their talking points are always the same:
- Anyone that questions the safety of the current vaccine schedule is an "anti-vaccine nut” (no mention that many of us believe selective vaccination has a proper role in medicine; we object to the one-size-fits-all schedule)
- You should listen to your pediatrician rather than a celebrity with nice tatas (no mention that your pediatrician generates significant revenue selling and administering vaccines and has a real conflict of interest; no mention of impressive list Steve posted.)
- Irresponsible parents are going to bring back the days of the iron lung or similar hyperbole. (No mention that the schedule is crammed full of vaccines for relatively harmless diseases like chicken pox and the flu, that booster after booster is rarely needed to achieve adequate titers for protection, or that we vaccinate against incredible rare disease that are less likely than an adverse reaction according to the package insert themselves.)
And my personal favorite....
- My child was totally unvaccinated yet still has autism. (These comments seem to show up in waves, the commenter has no history here, they never explain why their child was totally unvaccinated, and I'm willing to bet their email address submitted is fake or a throwaway gmail or yahoo account.)
As for AS, they did just fund Dr. Fasano's big ASD/gut disorder study, so there is some worthwhile activity there. However, they've decided to make a deal with the devil, they won't get a penny from me.
Posted by: Jeff C | August 29, 2011 at 01:02 PM
Unfortunately, ERISA laws wipe out Autism Speaks' work in many states as more and more companies are self-funded. All the glory but none of the payoff. If a family can indeed get ABA paid for - for a tot (when ABA may be helpful) I'm all for freeing up other dollars for other treatments. However, for those of us with older kids, many of the mandates exclude our age group or we old timers know that copious ABA for a 16 year old isn't tops on the list. And I doubt insurance companies will EVER step up to fully pay for what our kids needs - is that what's behind the DSM V changes - make fewer kids eligible for treatment? The entire process smells from start to finish and parents, families and the PEOPLE WITH AUTISM OF ALL AGES lose. Very depressing, whether you light it up blue or smear it with poo.... K
Posted by: Managing Editor | August 29, 2011 at 12:37 PM
"THIS includes $15,000 a year in ABA that is currently not being received by families, or they are struggling to pay for."
I am very familiar with the way AS has butted their heads into arguments regarding insurance coverage in my state. They insist only ABA therapy be paid for, saying everything else is not science based therapy. Legislators are not a well educated bunch, they pretty much take the word for whoever has a large cash pile or a following with a bunch of cash. AS comes in with all their glory and low and behold the template they shove in front of the legislator already strips any therapy away other than ABA.
Gee thanks, $15,000 goes pretty fast in ABA if you want results. I'd like to see the American Cancer Society recommend $15,000 worth of chemotherapy. Big help.
Posted by: bensmyson | August 29, 2011 at 12:23 PM
"At some point, you have to believe science rather than a former Playboy model."
What part of all the science listed herein, with NOTHING mentioned about Jenny McCarthy at all, did you misinterpret?
It is these baffling comments that make people smack their face with their palm, did you read ANY part of this article or just rush in to make a statement of misdirection and ignorance?
Yes, let's DEFINITELY follow the science, that IS the message being given by those that know vaccines cause autism and while not the only cause, they are definitely a proven cause unless you think Hannah Polling is the ONLY person in the entire world that suffers from vaccine-induced autism.
Just looking at the role glutamates alone play in vaccines, particularly when you throw aluminum and mercury (influenza) into the mix, yields plenty of science:
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15. Taylor DL et al. Stimulation of microglial metabotropic glutamate receptor mGlu2 triggers tumor necrosis factor -induced neurotoxicity in concert with microglial-derived Fas ligand. J Neurosci 2005;25:2952–64.
16. Samland H et al. Profound increase in sensitivity to glutamatergic –but not to cholinergic agonist-induced seizures in transgenic mice with astrocytes production of IL-6. J Neurosci Res 2003;73:176–87.
17. Deloncle R, et al. Aluminum L-glutamate complex in rat brain cortex: in vivo prevention of aluminum deposit by magnesium D-aspartate. Brain Res 2002; 946: 247-252.
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20. Aschner M et al. Involvement of glutamate and reactive oxygen species in methyl mercury neurotoxicity. Braz J Med Biol Res 2007;40:285–91.
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Posted by: Steve | August 29, 2011 at 11:48 AM
A little flower blossoms on the dungheap!!
Posted by: Jenny Allan | August 29, 2011 at 11:47 AM
My son was diagnosed with pdd nos in 1996. He had severe impairments at the time of diagnosis. I had noticed something "not right" from the day he was born (not wanting to be held or close to me, getting stiff with affection, unable to be comforted).
Last June, my son Caleb who had these severe impairments graduated high school, and will be attending the local community college in a couple weeks. I am grateful, and amazed at this young mans determination to beat insurmountable odds. Even his developmental pediatrician who had not seen him in years, was brought to tears by his recovery.
You claim that AS should dismantle, and has no reason for being. I live in NY, and just recently THEY were instrumental in the passage of the Autism Insurance Reform Bill that mandates coverage for essential autism services. THIS includes $15,000 a year in ABA that is currently not being received by families, or they are struggling to pay for.
How is this NOT going to have a direct impact on every family in this state? This isn't helping?
What about CARA (Combatting Autism Reauthotization Act going before the HELP Committee in Washington? Who is going to be there? Autism Speaks. Who is on the phone non-stop trying to get endorsements from senators to pass this $693 million legislation, and establish National Institute of Autism Spectrum Disorders Research (NIASD) as part of NIH in this legislation?
I agree more needs to be done at the local levels, there is and continuing to be a lot of work to do. Rates are rising faster than organizations can keep up them locally. But to say that NOTHING is being done to help ANYONE... so WRONG...
Posted by: Renee McAfee | August 29, 2011 at 11:32 AM
Scott, you say, "I am only expressing my belief and I have not done any of the research," and "At some point, you have to believe science rather than a former Playboy model." If you had done some research you would understand that there is a lot more to it than that.
Posted by: Twyla | August 29, 2011 at 11:30 AM
While I agree that AS's lack of action on vaccines is egregious, I do want to point out that the AS "Information on Vaccines and Autism" statement you linked to also says:
"Because it remains possible that specific genetic or medical factors present in a small minority of the general population might lead to an adverse vaccine response, Autism Speaks and other advocacy organizations are investing in research to determine whether subsets of individuals might be at increased risk for developing autism symptoms following vaccination. In parallel, it is important to make a sustained investment in monitoring and optimizing vaccine safety relating to variations in manufacture, new vaccines, and new combinations of vaccines.
"Because parents and guardians differ in their sensitivity and concern about this issue, we urge parents to find a pediatrician or health practitioner who will partner with them to consider their concerns, and help them ensure the optimal well-being of their child. We recommend that the decision of when and how to vaccinate be made after a thoughtful and thorough review of all the options, benefits, and risks in consultation with their own pediatrician. For example, while to date no published studies have evaluated the efficacy of alternative vaccine schedules, some parents are choosing to use these schedules in consultation with their child's physician."
I don't know what kind of research they are "investing in" but if they are looking for groups susceptible to vax injury and specifically vax-induced autism, that is a step in the right direction.
It is amazing how this IOM report continues to be spun as reassuring when actually it confirms that:
- Vaccines can cause inflammation of the brain, brain injury, seizures, and anaphylaxis (which is consistent with findings of inflammation in the brain and immune system dysregulation and seizures in many people with autism), and
- For many other alledged injuries there is not enough data to say whether they are vaccine related.
Plus, this report is not any new research, just a survey of existing research. Our govt agencies are still not doing in depth study of vaccine injured children, nor epidemiological studies comparing vaccinated and unvaccinated children or animals.
Posted by: Twyla | August 29, 2011 at 11:27 AM
I don't think it is as simple. The recent Stanford Medical School twin study that we can all welcome was partially funded by AS. These studies require a lot of money. Mainstream acceptance comes with a lot of compromise.
And you can't be serious when you say "it's neither our job nor or desire to convince parents of anything".
You have to understand that the majority of people in the autism community don't view vaccines as you do. Scott is not unique. Most people have not done their homework on the science, that is the sad reality.
Posted by: Cassandra | August 29, 2011 at 11:25 AM
Scott, no amount of ABA or training will get my kids brain encephalitis like ADEM back. They deserve respect for their medical condition, with treatments like immune therapies, supplements, diets, Hbot, IVIG and a host of other strategems that are not covered by "so called health insurance". Stop calling my kids autistic, they are not autistic, they have brain inflammation due to toxins, viruses and bacteria and possibly even the result of birth processes like immediate cord clamping and birth drugs. My kids almost died from their vaccines, with high pitch screaming, convulsions/collapse and inconsollability. I would have much rather preferred "so called dangerous" childhood rites of passage which I lived through. And, if you think polio was scary, I think DDT was even scarier, which is the true cause of polio.
They are also toxic because I was toxic with amalgams and lived near a cement plant that emitted tons of mercury over silicon valley. So, really, I am one of those parents that doesn't wholly blame just vaccines, but the accumulative affect up to the point of vaccinations. AS has never spoken the words of ADEM or brain inflammation, or viral persistence from vaccines, never. But the science is there, and why aren't they up to the state of art? Even Dawson "back then" at the U of W was exclaiming kids with autism can't recognize faces...gee, what does that sound like class? Mercury poisoning much?
I have no problems with researchers exploring such things as immune genetics (if genetics of the immune system are genetic, more like ghost gene generational poisoning), and or things like MTHFR/COMT, mitochondrial disorders, hemachromatosis, thyroid insufficiency, or even vitamin deficiencies such as cerebral folate deficiencies, etc...which would affect brain development in utero...but let's get real....a toxic mom has more influence on her genetics than genetics alone!
AS needs to have no support from our community, it needs no walkers from innocent parents, and most of all, it needs to be exposed for the pharmaceutical hacks they are. Geraldine alone makes 6k a year. How much does someone need to shut them up? Just about that much I suppose....sigh....
Posted by: kathy blanco | August 29, 2011 at 11:23 AM
While I admire your guts for posting your message, I completely disagree.
1. You should really do your research. As a psychologist, you should already have a 'head' for that work. I have, it's time you do before you come to another 'doctoral' assumption like that. LOOK at the studies, blogs and other notes posted here. You'll then see the many, many gaps.
2. Most of us on that read AoA and other blogs and news orgs and participate somehow, have one goal - To stop this epidemic spread of autism from occurring to more children.
The absolute goal for all of us should be to stop the madness. They found the source of HIV faster than this epidemic, yet we still flounder and struggle with the 'root cause' of the problem.
All children are different and react differently in different immunicological situations. Some develop normally, some develop inflammed brains, some gastro-intestinal issues, etc. Fact is, no one knows, but the science is TOO QUICK to dismiss what most of us parents know in our hearts - it was the vaccines. I know it, my wife does and probably many more.
Someday, I hope that someone proves I'm wrong, but for God's sake, let's agree to find it!
Posted by: Kevin | August 29, 2011 at 11:12 AM
I have no idea what caused my son's autism, but, given his lab results, he is simply not suited to further vaccination, so I exercise my right to refuse them for him. He is thriving. As we've corrected the physiological problems, he has improved. So, as Diane says, I will not accept autism, since there are correctable problems. I don't think my son would've toilet trained or improved to the degree he has without those interventions. Scott, I'm not a playboy bunny - I am a trained scientist and I prefer to not prejudge results, I like to see the data for myself, and I do. Everyday. I urge you Scott to do the research and to read. Let's face it - Jenny McCarthy has a recovered child, who, although still suffers from seizures, is recovered. So, it's possible. I would rather take guidance from a parent (who has worked with a useful MD), whose child is recovered than a doctor who cannot tell me why my child has autism, or how to help him, but he's 'sure' it's not vaccines. No thanks. I'll read for myself.
As for the real subject - I agree with the stance on AS. They do not help families. They do not help communities. I think we're all plenty 'aware' of autism. I want to see more real help from them. I want to see them pay their executives non-profit level salaries, not huge corporate level ones. I want them to move somewhere cheaper for their offices. I want the sob story adverts to go away and real research to happen so that we can help our children recover and prevent this happening to others. Autism Speaks, but not for me.
Posted by: SarahS | August 29, 2011 at 11:08 AM
Cassandra, success is measured in many ways. Lying and distorting the truth is not a very flattering measure of success. Nor is it sustainable.
AS is successful because they have distorted and controlled the message about autism. Bernie Madoff was successful because he distorted and controlled the message about what he was doing with the money. The tobacco companies were successful becasue they distorted and controlled the message about how dangerous their products are.
I expect AS will meet the same fate as Madoff and the tobacco companies.
Posted by: Harry H. | August 29, 2011 at 11:00 AM
AMEN!!! (and another Thank You, Dan)
Posted by: Donna L. | August 29, 2011 at 10:59 AM
Scott, your comment on Jenny McCarthy is not just offensive but dumb. As Kim pointed out she has done a lot to help children like your grandson.
Do yourself a favor and read up on the science, there are plenty of evidence pointing to vaccines as a cause of autism.
Posted by: Cassandra | August 29, 2011 at 10:54 AM
Scott, I'm jealous that you are able to accept autism and trust in vaccines. I wish I could believe that I was not responsible for authorizing two series of vaccines to my sick baby. I would be a much happier person if I were like you. I'm bitter. I can't and won't accept autism. I want good science; the science you speak of us has been brought to us by pharmacuetial companies and governmental agencies that have only two agendas and that is to protect vaccine policy and profit. I know it's hard to believce but Playboy bunnies can read and understand, that your science you wish to believe in, is very biased. We all love our children regardless of any disabilities. You should be a little more understanding that many parents here do not want our children to be autistic. I can't imagine my son commenting to me someday, "Hey, why didn't you leave me autistic. I would have rather constantly be distracted by fans, beat my head, and be non-verbal than go to a main-stream school. Oh, I really miss my tummy aches and constant diahrea. I really would much rather be by myself than with friends. Damn you mom, and you stupid diets and expensive therapies that were not doctor approved!" Scott, we all are trying to make sense of autism and all the other childhood disabilites that we are facing. Unfortunately you see it differently than most here and we are going to have to agree to disagree.
Posted by: Diane Farr | August 29, 2011 at 10:35 AM
You said it all! Thanks, Dan.
Posted by: Jennifer Hutchinson | August 29, 2011 at 10:26 AM
Hmm, AS with tens of millions, lobbyists galore and FREE "public service" ads courtesy of the ad council and major Mad Ave agencies versus an online site that operates on less than Geri Dawson makes in a quarter... You're kidding, right? It's neither our job nor our desire to convince parents of anything - simply to bring out facts that others deny, ignore and bury. Parents are voting with their children's arms.
Posted by: Managing Editor | August 29, 2011 at 10:21 AM
Scott - what do you have to offer us parents who *thought* our kid(s) might be somewhere on the ASD continuum, but when we addressed their physical needs/deficits they somehow morphed into normal children, functioning on a normal level (and sometimes exceeding "normal")?
I.e., my son who basically stopped growing and was sick constantly (so much so that we pulled him out of school) - who is now 6 feet tall and a black belt in karate?
I'm not a celebrity - just a mom, and a professional, who can READ and find the doctors who truly help. Wow. We've probably encountered several hundred people just in our little universe who know our story, and who know the truth of it. How many more parents are there out there like us? Plenty I imagine.
Mainstream "science" has betrayed these kids, and their parents. How can you not see the massive conflicts of interest? I will never, ever again ipso facto believe what is told to me by the very same system that destroys children in the name of the "greater good." Ugh.
Posted by: Parent | August 29, 2011 at 10:12 AM
Dan, I would like to agree with you but the truth is that AS's success points more to AoA's failure to reach out to enough people in the autism community to make the case for the vaccine autism link.
I know you are right on the science but you have to find a more effective way of spreading that message. IMHO telling the largest autism foundation to "shut up, shut down and go away" is not the right approach.
Posted by: Cassandra | August 29, 2011 at 10:12 AM
People need to realize the terrible damage AS does to communities. They come in and pillage every community that they do a walk or other fundraising event, taking all that money back to NY, leaving behind in it's wake, devastated and now broke, local organizations that actually help local residents. Those organizations who have been supported by their community are turned away from funders because they already gave all of their money to AS - who took it and ran. All of those orgs go out of business so they can no longer help local families. So not only do they waste the money once they get it back to NY, they also HURT the very families and communities they are supposed to he helping. AS sucks. Period.
Posted by: Holly B | August 29, 2011 at 10:09 AM
Scott, your intro is offensive - Jenny McCarthy is far more than your cliched description. And you're missing the point - overall Autism Speaks doesn't help current families - they spend their dollars with lobbyists for insurance mandate and on ads - very little of their budget helps anyone directly. Take a look at their spending on grants to non-researcher programs versus other expenses.
Other orgs are doing far more for families facing the very real challenges of autism - including our own sponsors - one of whom is Jenny's org and putting cash and direct support into families hands.
What you're promoting is pure hospice - without prevention, treatment or cure. It's simply not enough.
Posted by: Stagmom | August 29, 2011 at 10:06 AM
The only way they are going away is if we are loud enough to convince people to stop giving them money.
My blog from April: http://autismwars.wordpress.com/2011/04/05/why-%E2%80%9Cautism-speaks%E2%80%9D-speaks-for-no-one-but-themselves/ (if you don't like foul language don't read my stuff, you've been warned)
Posted by: Jenny Webster | August 29, 2011 at 10:03 AM
At some point, you have to believe science rather than a former Playboy model. My grandson is Autistic and it is a very difficult life for him. He does his best and has great parents who work very hard with him. I love that kid more than you can imagine. He was our first grandson - if I thought there was any chance of vaccines giving him this hard life, I would have fought the doctors giving vaccines to our younger grand children. I give thanks everyday that my grand children have been protected from all of the conditions prevented by the vaccines they have had.
My belief is Autism Speaks and the whole Autism community should be spending more time and money doing things to help those on the spectrum be as productive and happy as they can. Help with school, therapy, job challenges, respite for the parents, education of others, and spend less time listening to movie stars and other layman experts. Real science and not stories from people who are so desperate to understand a very difficult and scary situation, is what is needed.
I am sorry if what I said causes anyone any more pain or sorrow. That is not my goal. I am only expressing my belief and I have not done any of the research. One of my degrees is in psychology, but I am not an expert by any stretch of the imagination. Sometimes as the John Denver song says, "it is that it is just that way. Let the scientists figure out causes or ways to prevent Autism, we need to focus on those who are on the scale and show them how much we love them and give support to all the amazing parents, grand parents, and siblings who have such a difficult task. Thank you for reading.
Posted by: Scott | August 29, 2011 at 09:54 AM
The IOM report was funded by the folks who are defending the looted trust fund set aside for those children whose brains have been wrecked by a vaccine or two or ten.
"The review will help the U.S. Department of Health and Human Services (HHS) administer (do away with) the Vaccine Injury Compensation Program (VICP). VICP is committed to using science-based evidence to inform its decisions about vaccine-related adverse effects, and HHS turned to (paid for) IOM to provide a comprehensive review of study results on eight vaccines covered by the program. " from the IOM press release. http://www.iom.edu/Reports/2011/Adverse-Effects-of-Vaccines-Evidence-and-Causality/Press-Release.aspx
Posted by: bensmyson | August 29, 2011 at 09:54 AM
I can't get John Stone's video out of my mine!
He is just sitting there talking about business, and what a area of financial oportunity this will be! Enough for all of the drug companies to have a slice of the pie!
Oh my gosh these guys are so powerful and rich - I don't think there is any way to fight them!
Posted by: Benedetta | August 29, 2011 at 09:14 AM
Dan : Exactly - The man I thought was the guys at the CDC, and the NIH. Because when the American people figure out it is not just autism vaccines are causing but thyroid dysfunctions, diabetes, and obesity their heads are going to role.
And then John Stone's youtube video is brought to light and that is not it at all.
The man is the big bussiness of drugs doing bussiness as usually.
The man on John Stone's Youtube ( from Pfizer) says his company walks the walkathons with Autism Speaks, they talk all the time with Geri Dawson.
Pfizer is going to do lots of research and collabrate with all the drug companies for treatments.
The host ask how since it is such an array of symptoms. Pfizer man says drugs will be geared toward the social asspects of the disease.
How about a super drug that gets the lipid metabolism working the way it is suppose to again, and the rest of the social asspects will follow if there is not too much damage from the metabolism being shut down to begin with.
How about no drug at all; but prevention since we know darn well what it is.
Mark of the Beast - has shown it's face and it is "Surprise" It is Drugs and Medicine!
Posted by: Benedetta | August 29, 2011 at 09:08 AM
AT reminds me of dealing with my teenage son and his friends when they get together and formulate a scam, or a cover story for a minor crime. The lies are very very clever, credible, absolutely amazing ..the only thing they don’t ever,ever, think that people as adults do ,compare, exchangeand ivestigate stories and investigate the lies and slowly the truth comes out ..which will happen to AS...they are a blot that we can all do without sooner the truth is believed the better
Posted by: Angus Files | August 29, 2011 at 08:46 AM
Would "The Man" be the same "Man" that Kent spoke of?
Posted by: StephM | August 29, 2011 at 08:34 AM
Autism Speaks is supposed to be focused on children and adults with autism. In addition to the science pointing to vaccines provoking autism, the IOM report repeatedly points to vaccine injury vulnerability in the immune impaired. There are, at this point, hundreds of studies pointing to immune impairment in autistic children. These children should not continue to be vaccinated and someone who is on top of the science would make that recommendation.
Posted by: MinorityView | August 29, 2011 at 08:04 AM
Unfortunately, I do believe Autism Speaks has a reason for existing and its predatory work on the autism community and others is only just beginning: the task of screening the population for its newly patented pharmaceutical formulations piloted with 'pre-competitive agreements' with a consortium of behemoth pharmaceutical manufacturers is the next phase:
The only other point to be made about the AS empire as it evolves is that as far as they are now concerned the more autism that is caused by whatever means the better it is for business, and they have pretty well said so!
"If you want a picture of the future, imagine a boot stamping on a human face—for ever."
— George Orwell (1984)
Posted by: John Stone | August 29, 2011 at 07:38 AM