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Hate Mail and the Autism Wars

By September 14, 2008

I'm working my way through a new book entitled Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure by Dr. Paul Offit. Offit is a major expert in the field of immunology, and his book is a condemnation of the anti-vaccine movement which is so much a part of the autism world. Its very title is a challenge - and Offit has written a book which aims some scary accusations at a number of practicing doctors, researchers, journalists and activists. In short, it's a book which begs for a response, and is already receiving one.

Some of the responses are in the form of book reviews and direct reactions to specific accusations. But some are - and have been - less civil. In fact, Offit's new book begins with this statement: "I get a lot of hate mail."

The introduction goes on to describe stalkers who have literally threatened Offit's children, and more than one credible death threat.

Why is Paul Offit receiving threats of physical violence? He himself is not a violent man. Nor are the most prominent spokesmen for the opposition point of view (that vaccines cause autism). People like David Kirby and Dan Olmsted are writers, not vigilantes.

But somehow, between the angry barbs tossed back and forth on TV, YouTube and the Internet, someone is getting the message that violence might be the best way to end the autism/vaccine controversy. And I'm morally certain that Offit is not alone in his receipt of threatening hate mail.

Obviously, there are folks out there who are true believers. These folks are willing to take their beliefs way beyond anything intended by the writers and researchers of the autism/vaccine debate. These are the sorts of people who fight, not through activism, demonstrations, books or blogs, but through firebombs and death threats.

There are, of course, vast differences of opinion in the autism world. The question of vaccines as a possible cause of autism is clearly a flashpoint for serious dispute. But given the intensity of feelings that are being displayed right now, it seems to me we're heading toward something more dangerous than a war of words. It's this kind of intensity that led, not so long ago, to the death of at least one doctor performing legal abortions.

What do you think about the high-octane debates now surrounding the issue of autism and vaccines? Is there any way to bring the conversations back down to a civil level? Are we really pumping up parents and activists to the point where physical harm could occur? Share your thoughts.

Comments
September 14, 2008 at 2:47 pm
(1) Laura says:

There are certainly a lot of peaceful, reasonable and thoughtful individuals in the anti-vax movement. They’re just looking for answers.

That having been said, in some, there seems to be a pathology there – a blind devotion, a zealousness, something. I share your concern.

September 14, 2008 at 3:31 pm
(2) Kev says:

I’ve received 2 death threats, many wishes for ‘something bad’ to happen to me, an assumption of my child’s identity and numerous threats of violence. At least two of these have come from organisations very high up in the autism/antivax hierarchy. In fact, my very first confrontation with the autism/antivax movement led to me receiving an email stating that my autistic child was a ‘fucking bitch’ who would be better off dead.

In fact, I am debating someone right now from the autism/antivax community who believes it would be better to have Polio than be autistic – and better to be dead.

Sorry to be so partisan but these are people who have not adopted a rational position and hence you cannot expect rationality from them. I have seen them bully autistic teenagers out of a forum and harry parents out who questioned the vaccine connection.

We need to move beyond their ignorance and petulance and start the process of reclaiming autism advocacy for the good of autistic people.

September 14, 2008 at 4:44 pm
(3) JB Handley says:

Lisa Jo:

On the other side of the fence, we get plenty of hate mail and threats, too, as I certainly have.

We just don’t whine about it like Paul Offit.

JB Handley

September 14, 2008 at 5:31 pm
(4) autism says:

JB – I don’t doubt for a second that you guys guy a LOT of hate mail. Of course, most poison pen writers are just that: writers.

I’d imagine, though, that it’s pretty scary to get mail threatening your personal safety. And with the internet, it’s not hard to find out the details of anyone’s daily lives.

Whiner or not, Offit really opened my eyes a bit. I’ve noticed that often the people who are leaders in a cause (or even a therapeutic model) are more moderate than their followers… who are sometimes pretty absolute in their dedication. Such seems certainly to be the case when it comes to autism.

Lisa (autism guide)

September 14, 2008 at 5:51 pm
(5) Mark Blaxill says:

Lisa,
It’s very hard to judge the seriousness claims like Offit’s. But your suggestion that the violations of civil discourse lie all on one side of the issue are misplaced. Without question, the most consequential verbal violence has come from the establishment side of the debate. Rhetoric that regularly invokes the notion that “science has spoken” (science doesn’t speak, only evidence) and that opponents are “junk scientists and charlatans” and ends up with good men like Andy Wakefield on trial for what is nothing more than principled behavior and, yes, dissent from the orthodox views: these are for more worrisome forms of violence than some random parent in a momentary rage. Offit may receive empty threats, but the other side of the debate receives real penalties: they lose their jobs and their reputations. Not to mention the losses from autism itself.

Paul Offit plays the game of character assassination with malice aforethought, no rightful claim to personal hardship and no compassion for the desperate lives so many families with autism lead; if he attracts passionate attacks, well perhaps he reaps what he sows.

I strongly support a civil dialogue on the autism controversies, but I would submit you are raising concerns about the wrong side of the issue. Save your sympathy for your fellow travelers, Offit deserves none.

September 14, 2008 at 6:00 pm
(6) Kev says:

Mr Blaxill, who calls those who disagree with him part of the ‘wackosphere’ – very civil.

Can I just remind a few people here that Dr Offit’s children have been threatened? I know how that feels as my children have also. Comparing these insidious behaviours with a due process of law and/or professional behaviour is a joke.

The reason people like Andrew Wakefield are ‘on trial’ is because they deserve to be.

September 14, 2008 at 6:15 pm
(7) Mark Blaxill says:

Not surprisingly, Kev distorts the record. I call people who hide behind anonymous pen names on the internet and won’t put their personal names and reputations behind their strong opinion, the members of the wackosphere. That kind of cowardice doesn’t qualify as civil discourse. If you have a strong opinion to express, go ahead. But don’t hide behind an avatar identity.

September 14, 2008 at 6:32 pm
(8) Deb in IL says:

If it’s been proven that Mr. Offit lies, then how credible is his claim that he’s been threatened?

September 14, 2008 at 6:37 pm
(9) Wade Rankin says:

I have heard Dr. Offitt make his claims of threats, etc. on more than one occasion. But I have never seen any real evidence of those alleged threats. All of us who have expressed opinions in a public forum have had our share of hate mail. I know, though, that if I ever received a credible threat of violence, I would take whatever evidence I had immediately to the authorities, especially if those threats were directed at family members. Dr. Offitt may well have received something going beyond the typical nastygram; we really don’t know. And that’s the point.

September 14, 2008 at 6:56 pm
(10) MikeBTexas says:

I would suggest that a reference to the possibility that some agency or company would harm one’s children in the future could be construed and repeated as a “threat” to one’s children if that threat would help to garner sympathy and label an opposing side as nuts. I would be interested in knowing if the “threats” we are talking about are angry parents saying “How would you like it if this happened to your child?” or “Well someday when your child is hurt maybe you won’t be so smug!” (those would be somewhat more understandable and less qualified to be a “threat”) or someone saying “I know little Jimmy walks out of school at 2:15 and I am going to kill him since you killed my son…” Which would be a real “threat” and by all means scary, to be taken seriously, and should be condemned by all parties regardless what side of an argument they are on.

I think “vaccine violence” is really hypothetical at this point since I am pretty sure there is not a single case of something like that “actually” happening. I also think Blaxill makes a good point in asserting that personal and professional damage is “actually” done immediately once a parent or professional goes against the establishment on this issue, and most importantly the people with ASD lose if the ASD discourse cannot be a scientific one where all plausible hypothesis are ruled in until science can rule them out. I agree with former NIH director Bernadine Healey that some people appear to be affraid of the answer and are therefor not open to funding research that might provide some of those answers.

PS. I was recently told 20 DAN docs submitted research proposals this past year, mostly on simple efficacy research trying to answer questions like “Does so and so supplement, enzyme, etc. make a difference?” and not a single one was funded. If true I found that interesting since those studies are the cheapest and easiest to complete with some certainty and I as a parent would sure like to know some clear answers instead of “more research needs to be done” or “no research exists”. Are we really looking for the answers? or trying to protect a doctrine?

Respectfully,

-MikeBTexas

September 14, 2008 at 6:59 pm
(11) Jill says:

This is all just crazy. How is any of this actually helping our kids? I’ve seen this same fight play out on countless websites and these personal attacks we make on each other do more harm than good. It’s the reason there is such a shrill sounding voice coming from either side of the argument, because the people in the middle want no part of this crazyness.

And to answer my own question: it’s NOT helping our kids.

September 14, 2008 at 7:14 pm
(12) David Gorski says:

“If it’s been proven that Mr. Offit lies, then how credible is his claim that he’s been threatened?”

What evidence do you have that Dr. Offit lies? Please be specific.

September 14, 2008 at 7:19 pm
(13) autism says:

Actually, Offit is very specific about the threats that really concerned him (made toward his kids, and noting knowledge of their schools and daily routines). And, in the book, he says he did indeed contact the authorities and they did, in fact, provide security for some period of time.

Just to be clear, I’m in no way suggesting that hate mail or threats come from only one side of this particular debate. I know that’s not the case!

I’m just noting that the controversy (at least from where I sit, which admittedly is somewhat on the sidelines) is growing, not subsiding. I know that Jenny McCarthy’s new book is coming out in a couple of weeks – and that’s almost certain to lead to an even more intense period for people who are at the front lines of the debate.

Lisa (autism guide)

September 14, 2008 at 7:36 pm
(14) mike stanton says:

I would hope that everyone on this forum at least could agree that threats of violence are to be roundly condemned. Accusing someone of whining and suggesting that people reap what they sow appears to condone those threats.

Threats against Dr Offit have been reported in the journal Nature Medicine and reported to the FBI. They are not trivial.

September 14, 2008 at 7:51 pm
(15) Matt says:

I have no reason to doubt Dr. Offit. I’ve spoken to enough researchers who have voiced varying degrees of similar stories (yes, at least one worse than those related by Dr. Offit.)

When someone threatens your children, that is not “whining”. Downplaying threats as “empty” is easy to do after the fact.

It took guts for Dr. Offit to step forward again–in such a big way–after what has happened to him and others.

September 14, 2008 at 7:51 pm
(16) TheProbe says:

The problem is that JB and Blaxil fear anything that Offit says be true. They need a demon, as they truly lack facts, and they have designated Offit as that demon.

Lisa, your problem is that you believe that there can be “balance” in this controversy. As JB’s and Blaxill’s responses show, there will NEVER ever be balance. RealScience is on the side of vaccines, and fairy tale science is on the side of the merchants of disease, disability and death.

September 14, 2008 at 8:01 pm
(17) Sandy says:

Having opinions and disagreeing is one thing. Name calling and threats to speak your opinion is simply not right. The mans kids have nothing to do with anything. Taking their beliefs way beyond anything, such things make people nothing but an adult bully. I do think it could come to physical harm, making threats is harm. People have to physical do things differently once they’ve been threatened.

People can name call and treaten all they want. It wont change things at all and no one listens in the end but the police.

September 14, 2008 at 8:08 pm
(18) jonathan says:

The only way to end this debate is to do research that will discover what the etiology of autism is and the way to cure it and finding a cure for this dreadful disorder once and for all. No amount of scientific evidence will ever convince those who believe in this hypothesis, so what is the point of the government and others funding this work? Along with the vaccine cause autism camps quick fix solutions is neurodiversity, saying that progress can happen and a cure is not necessary but never provide any evidence for this spurious claim. Millions of dollars have been spent trying to disprove this link and for what! So people will finally be convinced their kids need to be vaccinated.

It is time to spend the money on more productive research like genetics, MRI brain scans, finding postmortem samples for autopsies etc, so that a cause and prevention and perhaps even a cure can be found for this as soon as possible. However, based on the fact people just won’t let the vaccine hypothesis go and the fact that fringe groups like the neurodiversity movement can get any media coverage and people take them seriously, i am not too optimistic about that happening.

September 14, 2008 at 8:14 pm
(19) Liz Ditz says:

@ 9, MikeBTexas: “I was recently told 20 DAN docs submitted research proposals this past year, mostly on simple efficacy research trying to answer questions like “Does so and so supplement, enzyme, etc. make a difference?” and not a single one was funded.

#1 — do you have some kind of objective, verifiable reference for the “20 DAN docs”, or was it just something someone said?

#2 — it is important to draw a distinction between the subject of the requested funding, and the quality of the research design. It might be really important to research the XYZ therapy, but if the research design submitted is substandard, it shouldn’t be funded.

#3 — research funding is down all over.

Putting #2 and #3 together, you can’t conclude anything from the alleged lack of funding, from the data given.

September 14, 2008 at 8:18 pm
(20) Matt says:

The mans kids have nothing to do with anything.

Someone called Dr. Offit and threatened his kids.

Wrong. Absolutely wrong.

The man is standing up for what he sees as right in the face of such threats. I thank him for it.

September 14, 2008 at 8:30 pm
(21) Sandy says:

What I meant was threatening the mans kids, who have nothing to do with anything. It’s a cheap shot to get to the man.

September 14, 2008 at 8:59 pm
(22) autism says:

Sandy – that’s really my point. That and the possibility that people who threaten kids (and their parents) aren’t always just blathering. As the converations become more vitriolic, it seems to me that there may be some who will misinterpret calls to political action as calls to violence.

I’m honestly not quite sure why the autism community is prone to this sort of thing… maybe it’s the way things are when ANY subject of real importance is under debate.

Whatever the reason, though, I’m hopeful that the leaders of the conversation will be able to help their followers understand that there are limits – and what those limits are.

Lisa (autism guide)

September 14, 2008 at 9:34 pm
(23) Sandy says:

I personally think it’s sad when people have to go so low as to threaten at all, but to include children, I think it should go public and to the police. If people made those threats, let it out for the public to know. The only shame is of those who made those threats. It’s a good warning for all. I remember some years back the campaign to force Oprah to do a show. Many in the autism community were sending Oprah’s supposed home address. What comes of this is the thought of an unstable person, or bully.

This is no way is the means to gain attention for autism, research, prevention or cure. It also depends on who you are as to what you’re expecting. The autism community is as vast a spectrum as autism is itself and not everyone within wants the same things.

Autism/vaccine controversy is never going to end until there are answer’s and every one should settle down. It may take many years to ever get those answers and threats wont make it happen any sooner.

September 14, 2008 at 9:38 pm
(24) Ms. Clark says:

http://onibasu.com/archives/am/226388.html

Want to see what a typical comment from an antivaxer about Offit looks like? I linked to it above. Here it is:
“What’s black and white and can’t fit through a doorway?

Paul Offit in a black Armani suit with an African Spear through his head.”

Robert Bloch is a fairly well known, “old-timer” mercury dad. That comment was from April of this year.

Handley has threatened to send a camera crew to my home, which he claims is a “trailer” … to somehow intimidate me. He apparently did some kind of internet stalking and decided that I lived in a trailer, so earlier he called me a “trailer dwelling coo coo.” Then he bought AutismDiva.com and pointed it to Generationrescue.org. Then he bought PaulOffit.com and pointed it to generationrescue.org and claimed in the whois information for himself as the owner of the URL that he lived across the street from the White House in Washington, D.C.

I seriously doubt Handley has had ANY hate mail. The sicced his lawyer on Kev. This AFTER Handley had posted to Kev’s blog that he (Handley) would like to kick Kev in the face (if he could play soccer with Kev… yes, violent, that’s what I thought, too).

Handley has made gross insults with sexual innuendo toward me. One he made was that dogs would eat my underwear because my underwear were made of dog bones or something similarly perverted. The comment may still be on Kev’s blog. But Handley he wants everyone to think he’s such a gentleman.

There was a call on the EoHarm group for people to call Obama’s campaign office and complain about a pro-vaccine comment. The person making the request wrote:
“PLEASE BE CURTIOUS [sic] WHEN CALLING….This is a plea to show our science not a lynching.”

Lisa, I hear that you aren’t posting these comments in a fair way. Are you trying to silence your critics? Is this censorship? Would your bosses approve?

September 14, 2008 at 9:47 pm
(25) AutismNewsBeat says:

On the other side of the fence, we get plenty of hate mail and threats, too, as I certainly have.

We just don’t whine about it like Paul Offit.

No, Mr. Handley just sues people who publish unflattering things about him.

September 14, 2008 at 9:50 pm
(26) autism says:

Ms. Clark – actually “my bosses” are only involved with reviewing articles on the website (of which there are now over 300) for medical accuracy (in fact they rarely make any changes at all). As you probably know, About.com is a vast enterprise with over 750 separate sites – and while this one is somewhere in the top half, it’s nowhere near the top 100!

I didn’t realize until I read your post that WordPress was picking up a few of the posts in moderation. I’ve just posted one of Kev’s.

Lisa
(autism guide)

September 14, 2008 at 9:55 pm
(27) autism says:

It’s almost 10 pm here on the east coast, and I’m going to be turning off the computer shortly.

I am going to ask that posters please NOT make personal accusations here.

My reason for this is simple: this site is intended to provide information and insight to people who may be brand new to the autism community. These folks are in need of support and information – the kind of support that every one of you provides to families in your own way.

I would prefer to keep the lines of communication open here – and (pending WordPress moderation, which is out of my control while I’m sleeping) this is an open forum.

I won’t cut anyone out of the conversation. But if it gets really out of hand, I will delete this entire post and move on to another, less ferocious subject.

Thanks in advance,

Lisa (autism guide)

September 14, 2008 at 10:21 pm
(28) Ms. Clark says:

Thank you, Lisa. I’m apologize for assuming that you were censoring comments.

http://onibasu.com/archives/am/232435.html

“This is my daydream. I am coming for you Paul.”

They want to inject him with thousands of vaccines. Cute.

http://onibasu.com/archives/am/147738.html

The “hate” him. That’s obvious enough.

It looks like the mercury/anti-vax parents think he makes every single decision made related to vaccines in the United States (come to think of it, maybe they think he makes all the decisions about vaccines for the whole world). They talk about him (and Julie Gerberding, too) as if he’s a supreme vaccine despot, waving his hand and ordering thimerosal in or out, aluminum increased for the sheer fun of it… he surely must determine how many children will have adverse reactions to vaccines each year, even for those vaccines he had no hand in inventing. He’s like the direct-opposite of the easter bunny. They seem to think he’s got some magic powers and he uses them all to hurt children. The way they describe him and what they attribute to him is totally bizarre.

September 14, 2008 at 10:36 pm
(29) Frederic says:

Rudeness, hatred or threats of violence immediately disqualify any writer from being taken seriously. They have no place on rational discussion sites such as this one.

We can express strong feelings without resorting to brutish expressions from the primitive reptilian brain.

I like the recommendation of another writer who suggested the following (paraphrased):

Here is a quick and easy way to end the vaccine/Thimerosal/Autism controversy. Get all the people that manufacture, promote and administer vaccines to inject themselves with body-weight calibrated doses equivalent to that given to a six-pound baby

Therefore, if a person weighs 150 pounds, they’d need to inject themselves with 25 times the dose of each of the infant vaccines, HepB, Hib, Polio, DPT, etc. And let’s make sure they contain the “harmless” preservative, Thimerosol.

Let’s start first with Dr. Paul Offit. If he is so certain that vaccines are absolutely safe in the doses given, lets get him to inject himself with 25 times the dose of each of the infant and childhood vaccines and be sure to top it off with a 25 times dose of the MMR vaccine. Surely that would be clear proof that vaccines, as presently administered, pose no danger at all.

Offit insists that vaccines are safe. Let’s have him prove it! What could be simpler or more reasonable?

Any chance he might accept the challenge? Of course not. And there is your answer.

September 14, 2008 at 11:07 pm
(30) Sandy says:

The challenge really isn’t getting some one to inject themselves with vacciones. One can hardly duplicate a grown man to a child to begin with and it would prove nothing.
The challenge really is why the autism rates have not dropped since the removal of Thimerosal?

September 14, 2008 at 11:22 pm
(31) HCN says:

Also the MMR has never contained thimerosal at any time in its almsot 40 years of use (approved in the USA in 1971).

While two sides of a story can be appropriate for certain things, it is not quite the same for issues that depend on science. The only two sides of the vaccine/autism issue is science and non-science. The science has shown that there is no relationship between vaccines and autism. Vaccines do cause adverse reactions (usually a temporary fever and soreness at the injection site), but they are not a main cause of autism.

At the present time I have seen no real scientific eviendence that shows that the DTaP, MMR, Hib, or other vaccines have more risks than the diseases.

Ms. Conrick, you should perhaps take your daughter to a good neurologist to get a second opinion. You should be wary of those frightening test results, and ask for confirmation from someone qualified enough to be covered by health insurance. Good luck.

By the way, my issue in this was having a child with enough health conditions that required he depend on herd immunity. Unfortunately herd immunity was diminished in my county, causing a pertussis epidemic. That was also at a time that over 120 Americans died from measles. We had to restrict his contact with others for a while when he was an infant.

Fortunately no one came to the doctor’s waiting room with measles while he was very young. Though he did have to be taken by ambulance to the hospital when he had a seizure caused by dehydration during a gastrointestinal illness that could have been a rotavirus.

September 15, 2008 at 12:18 am
(32) MikeBTexas says:

@ 19 Liz Ditz says:

“#1 — do you have some kind of objective, verifiable reference for the “20 DAN docs”, or was it just something someone said?”
REPLY – You fail to include my original quote “If this is true…” A DAN doc who has completed this type of research and appears to have self funded a pretty good design told me this at a conference last week. Not sure if it is true but this is not JB information or anything, the guy is an MD with a couple kids on the spectrum and is pretty involved with researching efficacy. My guess based on the kind of research that appears to get funding (mostly genetic) it is probably true though…

“#2 — it is important to draw a distinction between the subject of the requested funding, and the quality of the research design. It might be really important to research the XYZ therapy, but if the research design submitted is substandard, it shouldn’t be funded.”
REPLY – Agreed. But all 20 designs may have been perfect. Efficacy research based on straightforward biomedical supplements are not exactly rocket science. We have no way to know at this point.

“#3 — research funding is down all over.”
REPLY – Mostly agreed. However Autism is the golden child right now and appears to have enjoyed increased funding at almost every level from what I am able to ascertain.

“Putting #2 and #3 together, you can’t conclude anything from the alleged lack of funding, from the data given. ”
REPLY – I did not ask you to conclude anything. I reported information and asked a probing question “Are we really trying to find answers? or protect a doctrine?” I still believe that question is relevant. (quite frankly on both sides, I mean where is the Chelation study that was supposed to be published a year ago out of AZ or NM or whatever? Did we not like the results? I want the truth, whatever that is, not protection of either side’s doctrine.)

Respectfully,

-MikeBTexas

September 15, 2008 at 1:44 am
(33) Lise at home says:

My son had reactions to each of his early vacs. He became sick with the first one and it was seen as a reaction that some kids have. He became really sick with the second one and again it was written off as a reaction. The third vac we took him to the hospital and he was admitted for observation over night. The forth and last vac we allowed saw him looking like a child ready for coffin to be buried in. When we voiced our concerns and the relationship we saw between the vacs and his sickness and subsequent behavior afterwards, we got little support and a whole lots of speeches on the importance of vacs for children and the great things the vacs have done to better our world and millions of healthy people as a result of the vacs can’t be wrong, etc., etc.

WE don’t disagree that vacs have changed our health for the better. We don’t disagree that the vacs have helped eradicate illness that brought tragedy and hardship for many. We don’t disagree that vacs in the populace have helped better the world against illnesses and infections that would otherwise have infected and killed many.

What we do disagree with is that the vacs are right for “everyone”. Both my husband and I have had all our shots and many more having traveled the world. We each have needle records several pages long. We each did not think twice to have our son vaccinated after he was born. Neither of us saw the first reaction as anything serious. Neither of us took too harshly to the second illness after the second vac. Both of us did a double take when he started to regress while getting better from his hospital stay. Both of us were angry that the Dr. sent us away with info on why the vacs were good while our son lost a third of his body weight and all of his speech and eye contact after his forth vac. Neither of us had any clue that the vacs could jeopardize our child’s life the way that it did, nor cause the lifelong mental digress that he now has.

We have since learned all we could about the connection between vacs and autism, which our son was diagnosed with before his second birthday. We have taken part in some forum bantering and have seen things get ugly really quickly. We have voiced our opinions to our friends and family and health practitioners. We have been degraded, insulted and called liars. We have been told we exaggerated his illnesses, made him sick for attention, given him poison to make it appear to be connected to the vacs, and we have been told not to attend parent groups because we cause controversy with our story and upset the new parents with young children.

We have chosen not to give the vacs to our daughter and we will not have our yet unborn son vaccinated either.

We have read the latest info on how the vacs have apparently been proven to not linked to autism. We believe that there is an increasing need to know the truth about a or any relationship between the two. We believe that there would be shear panic if one were found. We believe that vacs are important and have thier place in each and every society. We also believe that the vacs caused our sons disability. We know what we saw and lived each day watching our son get worse and regres. We feel somehow responsible for not being informed enough about the debate about the possible relationship, although looking back we can also admit that we are not sure we would have changed our mind about the first or even second vac if we had known.

It has been over a year since we have participated in any sort of forum discussing this dilemma and controversy. We just have a hard time understanding why there is even any opposition towards those who believe that the vacs are not a one size fits all necessity to life and health.

We would never have believed that the vacs could have done this till we saw it happen to our own child in front our eyes. All the science and data and tests and debates and threats and insults and ill-mannered voices do not change nor persuade us to doubt our memories or change our conviction. We suspect it is the same for many parents who have witnessed a similar set of events. We suspect that this is the fuel in the hearts of those who believe there is more to the long term interactions of the vacs and our changing environment than has or could have ever been predicted. We believe that we are an evolving people, and sometimes what worked before slowly starts to interact with what we are moving toward in unpredictable and unfavorable ways. We now know that certain blood types were more likely to survive different plagues from centuries ago. Could this be similar, although laboratory conceived? Hindsight is always 20/20. Looking back on the our sons first 18 months of life, our hindsight is 20/20 too.

Please don’t hate us because we don’t believe that vacs are safe for every child. Please understand that our belief is from what we saw, and we saw a child react to the vacs, regress in his behavior, and then get diagnosed with Autism. Threats are not going to change that, they only add insult to injury in the most inhuman of ways – hate.

September 15, 2008 at 6:15 am
(34) mike stanton says:

I do not think it is accurate or helpful to characterize the vaccine question as a dispute between the camps of neurodiversity and anti-vaxers. I have no reason to suspect that Dr Offit is a proponent of neurodiversity. I expect he would concur with Dr Tayloe in describing autism as a disease and would cure it if he could. (Now, there’s an irony. What would we all say if Dr Offit developed a vaccine against autism?)

The question of vaccine safety is one for science. At this moment in time the weight of scientific evidence goes against the idea that vaccines cause autism. I do not think that “more research” is the answer. Mady Hornig and Ian Lipkin are researchers whose work has been welcomed in the past by anti-vaxers. When their recent study of MMR concluded that there was no connection between MMR and autism their erstwhile supporters condemned the study. It was supposed to be tainted by the involvement of the CDC.

I think it is time to call a halt. The vaccine debate is over. Those who deny this seem to have closed their minds to rational discussion – hence the personal attacks on the integrit and motivation of scientists and clinicians like Dr Offit.

September 15, 2008 at 6:26 am
(35) Sandy says:

I have a cousin who had a severe vaccine reaction. For her, nothing ever came of it. Severe reactions and getting sick doesn’t often mean autism will follow. Regardless of persuasions of the medical field, it’s not against the law not to vaccinate a child. For those who want safer or no vaccines, then get a waiver when the child becomes school age but don’t threaten a mans child for mostly what was parents own choices. Hate is not disagreeing with vaccine choice. Hate is threats to other people, which included their children.

September 15, 2008 at 7:09 am
(36) autism says:

re research funding – I’ve found myself going in circles on this issue.

A researcher in the US can go to the federal government, but in this case $ even from the NIH is suspect.

They can go to a disease-specific foundation, but in this case Autism Speaks “owns” the lion’s share of such funding – and in many peoples’ eyes their funding is suspect.

They can go to corporations interested in developing drugs and/or marketable therapies. But again, the funding is suspect.

They can raise their own money, and do their own personal research. But in MY mind, at least, that funding is even more suspect – because there are no rules governing ethics when the funding is private.

If you were planning a research study related to autism – and you were an American researchers – where would you turn for cash to avoid the possibility that your outcomes would be questioned by at least one consituency?

Lisa (autism guide)

September 15, 2008 at 8:30 am
(37) mike stanton says:

Lisa,
I think anyone who sets out to try and please all the constituencies is going to produce a worthless piece of research. The only constituency that matters is peer review. The rest of us may be competent to challenge research priorities, raise ethical considerations or argue about the implications for public policy etc. But when it comes to technical considerations like study design, implementation, data analysis and the robustness of the results we are not qualified to judge. We have to leave that to the experts.

Regarding finance, does it matter so long as the science is good? Paradoxically, I would have more confidence in a study into, say MMR and autism, that was openly funded by Merck because the potential for a conflict of interest ought to ensure a more rigorous peer review.

September 15, 2008 at 8:32 am
(38) AutismNewsBeat says:

As long as anti-vaccine activists ignore the science, they will always question the outcomes of studies they do not agree with.

September 15, 2008 at 10:03 am
(39) Bill says:

You can blame the lack of science and mathematics education for this problem. Someone with even a basic knowledge of science and mathematical statistics will look at the debate and instantly know which side is in the right. An uneducated person will point at a study or two which shows a connection to autism and shout “See this causes autism!” An educated person will look at those same studies and immediately realize that there was no way to control for errors on that type of study.
When an educated person looks at a study which shows no connection, that person, knowledgeable in logic and statistics, knows that the only way there could be an error in a study which shows no connection, is for there to be exactly offsetting errors, which is a very remote possibility. When study after study shows no connection, and these studies come from different parts of the world, and different cultures and situations, then the odds of the same offsetting errors in each study become ridiculously unlikely. The person with even a rudimentary knowledge of statistics knows that since odds calculations are multiplied as fractions, as the minuscule odds of error in these studies are multiplied together, the odds of all of the studies being wrong in the aggregate are incomprehensibly tiny.

Contrast this with say, the premise one of the journalists on the other side of this argument posed. He claimed that the Amish didn’t have Autism because they are not vaccinated. To someone not familiar with the Amish, or not familiar with genetics, it would be pretty easy to dupe people.

In fact, Amish people do have autism, but it is difficult to tease out the numbers because the Amish believe in self-reliance, and eschew public services. The Amish have no religious or cultural ban on vaccination, and many are vaccinated. Again, it is difficult to track public records. If you were to try to find a population to study autism versus vaccination, you could not find a worse example than the Amish for two genetic reasons- first, since they do not marry the “English”, they keep their gene pool isolated. This results in statistical aberrations in genetics which you would typically find in groups with a lot of inter-marrying, caused by rare recessive genes being present in both parents. Second, anyone familiar with essential autism, knows that essential autism and Asperger’s are related genetically. A person with Asperger’s who lacked the empathy and identity with his peers in the Amish community and broke with their religion and traditions, would be shunned, effectively removing him (or her) from the Amish gene pool. So we have a mechanism in place which “cleans” autism from their gene pool.

Any one of these four characteristics would make the Amish unsuitable for any kind of definitive study of causation between vaccinations and autism, yet one journalist kept hyping this not well thought out premise on the internet. If that journalist cannot comprehend the glaring faults in his premise, even after they have been pointed out to him, how can you trust anything he says?

What I do not understand regarding these people on the internet who lack proper education, yet give medical advice, is- how come none of them are going to jail for practicing medicine without a license? The consequences of these journalists with Quixotic quests are real death and great harm as the gullible fail to vaccinate, and parents force dangerous chelations on their autistic children. Measles can cause death or blindness. If we were to have epidemics of German measles, we would have a certain percentage of mothers bearing babies with autism caused by brain damage, so the vaccine scare will have no effect on genetically inherited essential autism, but will cause additional cases of fetal trauma autism, or what we used to call “retarded kids”.

When people do not understand science and mathematics, and believe anything some “inspired” person tells them, they are really no different than the people who burned witches or thought solar eclipses were connected with disease or famine.

I am pointing out facts, not giving advice, if you want medical advice, talk to your doctor.

September 15, 2008 at 11:23 am
(40) passionlessDrone says:

Hi Bill –

Someone with even a basic knowledge of science and mathematical statistics will look at the debate and instantly know which side is in the right. An uneducated person will point at a study or two which shows a connection to autism and shout “See this causes autism!” An educated person will look at those same studies and immediately realize that there was no way to control for errors on that type of study.
When an educated person looks at a study which shows no connection, that person, knowledgeable in logic and statistics, knows that the only way there could be an error in a study which shows no connection, is for there to be exactly offsetting errors, which is a very remote possibility. When study after study shows no connection, and these studies come from different parts of the world, and different cultures and situations, then the odds of the same offsetting errors in each study become ridiculously unlikely. The person with even a rudimentary knowledge of statistics knows that since odds calculations are multiplied as fractions, as the minuscule odds of error in these studies are multiplied together, the odds of all of the studies being wrong in the aggregate are incomprehensibly tiny.

I’d make a million dollar bet you haven’t actually read any of the studies comprising the compendium of studies showing no link between autism and vaccinations. Because if you had, you’d be asking the same questions of the community that keeps insisting that the studies are complete, much less done competently.

Two of the largest were from Denmark wherein during the course of the study, the criteria for having autism changed from hospital admissions only, to any diagnosis. The rates of autism literally quadroupled, overnight.

What else could be found, except an increase in autism was found even if a specific preservative was removed from the vaccines? Mr. Offit reported that it was difficult to imagine a more soundly desgined study. It is this kind of thing that is making people with plenty of education highly skeptical.

The overwhelming majority of studies (if not all) have looked at either the MMR, or the presence of not of a particular preservative; as if this is a comprehensive picture of the vaccine schedule. We have a schedule comprising a dozen different innoculations, given in stages, at different stages of development, sometimes in conjuction and sometimes not.

As someone with a keen grasp of mathematics and logic, maybe you could explain how studying the MMR gives us any insight into the impact of the HIB, DTAP, or Hepatitis B shots. Or the impact of getting all three during one visit? If research on this does exist, it should be a simple task to provide a link to them.

In the latest study by Hornig, studying MMR and gastro intestinal distress; only five of twenty five children developed gastro issues after receiving the MMR. Maybe you could use your excellent statistical knowledge to explain to me why having 80% of your population having a condition pre-existing the potential trigger is sound science?

It has been widely reported that most of the people choosing to selectively vaccinate have relatively high levels of education.

I am personally very much against any threats of physical violence.

- pD

September 15, 2008 at 11:43 am
(41) Margaret Toigo says:

“What do you think about the high-octane debates now surrounding the issue of autism and vaccines?”

They are not “debates.” The issue of autism and vaccines is a false controversy — like evolution and creationism. It’s not a genuine argument about one set of legitimate scientific findings versus another.

I do not debate this issue. Rather, I de-bunk the pseudoscientific assertions made by anti-vaccination activists, and their adherents, for the notion that vaccines are causally connected to autism is an urban myth, and is therefore unworthy of debating as if it was still a scientifically viable hypothesis (it has been dead since 2004, at the very latest).

How passionately some folks may believe in the assertions of anti-vaccination literature is irrelevant because nearly 30 studies of thimerosal-containing vaccines, and the MMR vaccine (which never contained thimerosal) found no causal connection between vaccines and autism.

Not only do we have almost 30 scientific studies that found that vaccines do not cause autism, we also have the findings of the IOM, FDA, CDC, AAP, AMA, and numerous others that reviewed the all the scientific evidence and concurred with it that vaccines do not cause autism.

In order to take anti-vaccination literature seriously, one must subscribe to the belief that the researchers and scientists who conducted those nearly 30 studies, and the people at the IOM, FDA, CDC, AAP, AMA, and numerous other organizations, who reviewed all the scientific evidence, and concurred with it that vaccines do not cause autism, are all either lying or incompetent — and that is a conspiracy theory, which is one of the primary hallmarks of a crank cause.

“Is there any way to bring the conversations back down to a civil level?”

One thing that might help would be if journalists who report on this issue would quit with the “fair and balanced” concept of news reporting that is essential to stories about politics and crime, but is inappropriate in science reporting.

As far as the science is concerned, there is only one side and that is what the uncontroversial science shows. Science is not a matter of opinion, and it isn’t fair or balanced — and how some folks might feel about that is immaterial.

People are entitled to equal consideration and respect. The value of ideas, on the other hand, must be judged solely upon merit — and the idea that vaccines have some causal connection to autism is completely without merit.

It would be most helpful if journalists who report on the issue of vaccines and autism could remember this principle, and reserve the fair and balanced approach for crime reporting and election news.

“Are we really pumping up parents and activists to the point where physical harm could occur?”

I certainly hope not.

September 15, 2008 at 1:48 pm
(42) Brett says:

@11 – Jill:

You’re right, this discussion is not helping our kids. I appreciate your trying to inject some sense into the discussion here, but I don’t think your message made it through all the shouting.

September 15, 2008 at 2:25 pm
(43) mike stanton says:

The whole vaccine autism debate arose in the USA because there was an increase in children qualifying for autism services coincident with a change in the vaccine schedule. The increase was also coincident with changes to the diagnostic criteria and to regulations regarding the provision of services.

But if you look beyond the USA to Britain we have always had less vaccines than the USA and we have always had more autism. In 1966 Lotter developed strict diagnostic criteria based on Kanner’s observations and found between 4 and 5 in 10000. In 1979 Wing and Gould found similar results using Lotter’s criteria. But when they included all those children who did not quite meet the criteria for Kanner’s autism but did all share in the triad of impairments they found a much larger total of 20 in 10000.

Fast forward to 2001 and Chakrabarti and Fombonne found comparable levels of autism in children with learning difficulties But when they included children within the normal range of abilities the rate went up to 61 in 10000.

That is how our “epidemic” took shape: Kanner’s autism 5 in 10000; triad of impairments 20 in 10000; all autistic spectrum disorders 60 in 10000. And no need to invoke vaccines at all.

September 15, 2008 at 3:16 pm
(44) Sullivan says:

Mike Stanton noted;

Now, there’s an irony. What would we all say if Dr Offit developed a vaccine against autism?

The irony is that there is a vaccine against a certain form of autism: the rubella vaccine. In preventing outbreaks of rubella, it prevents congenital rubella syndrome, which appears to be causal in some forms of autism (one of the known environmental causes).

To further the irony, the Rubella vaccine was invented by Dr. Hilleman. Dr. Offit holds the Maurice Hilleman chair (as one of the two he holds). Further, the co-inventor of the Rubella vaccine was Dr. Stanley Plotkin, who also co-invented the RotaTeq vaccine with Dr. Offit.

So, Dr. Offit linked to someone who has prevented autism directly. Also, another of the inventors of RotaTeq helped reduce the number of people with autism by a previous vaccine invention.

September 15, 2008 at 4:59 pm
(45) ANB says:

That is how our “epidemic” took shape: Kanner’s autism 5 in 10000; triad of impairments 20 in 10000; all autistic spectrum disorders 60 in 10000. And no need to invoke vaccines at all.

That’s so easy to understand, I’m left wondering why so many intelligent people think vaccines must be involved. The evidence against the link seems so clear. If only the anti-vaccine activists could stick to evidence, perhaps all this animosity would disappear.

September 15, 2008 at 6:52 pm
(46) Ms. Clark says:

More irony?

Mike Stanton asked what would people say if Dr. Offit created a vaccine against autism. Matt answered there is one and that coinventors of the rubella vaccine have a “tie” to Dr. Offit, or he has a tie to them.

But Dr. Offit’s own rotavirus vaccine may have prevented some cases of an autism-like disability. GASP!!!!

The mercury parents want everyone to believe that mitochondrial disease/disorder plus a vaccine can cause autism. I don’t think it causes autism, I think it causes mental retardation that might include some superficial appearance to autism. However, what is not in question is that a mitochondrial crisis can be caused by a fever or serious diarrhea. I didn’t make that up.

So a baby with a mitochodrial disorer/disease giving it a predisposition toward developing encephalopathy following a bout of diarrhea could be saved from that fate with the rotavirus vaccine.

The more children who are vaccinated with the rotavirus vaccine, the fewer that are likely to become disabled like Hannah Poling. In part because fewer kids will be having bouts of diarrhea caused by rotavirus while at daycare with other babies around who can be exposed. It appears that this is one reason why there are fewer cases of rotavirus this year… even the unvaxed kids are benfitting because fewer kids are having diarrhea in places where the germ can be spread. I mean, this is obvious, right? Diarrhea from a toddler who is in company of other toddlers… sharing toys, eating in the same area, etc, can spread the germs, diarrhea being all liquidy and likely to get spread around by accident and so forth.

Dr. Offit, inventor of an anti-”autism” vaccine!!!! Yay!!!! Let’s call him up and threaten him some more… :-/

September 15, 2008 at 7:05 pm
(47) Sullivan says:

Ms. Clark is correct.

In response to the Press coverage of the Poling case, the CDC held a press conference of its own.

Edwin Trevathan spoke of some of the triggers of mitochondrial crises:

But when placed under severe stress due to infections or vomiting, diarrhea, dehydration, fever, other sorts of stress like perhaps severe sleep deprivation or malnutrition they′re not able to …compensate for their severe energy needs. And because the brain actually has such a high need for energy and utilizes a large amount of energy, when these children are under stress the brain is really the organ that tends to often suffer the most. And so, when they′re under severe stress, often for a variety of different reasons and the reasons can vary from child to child based on which severe source of stress happens first, they tend to have severe neurological deterioration and decompensation that′s manifested by a loss of normal neurological function.”

Lisa, you may be pleased to hear I found that information here:

http://autism.about.com/b/2008/03/26/cdc-media-event-on-autism-vaccines-and-mitochondrial-disease-your-opinion-invited.htm

September 15, 2008 at 7:29 pm
(48) Sandy says:

Just a comment about rotavirus. There was no vaccine when my kid was little, however when he had rotavirus he already showed signs of autism. He had diarrhea that was nasty for 13 days straight. Had there been a vaccine, I would had given it to him.

September 15, 2008 at 8:41 pm
(49) nhokkanen says:

An apt quote in today’s Minneapolis Star Tribune…

“The chief enemy of peace is the spirit of unreason itself: an inability to conceive alternatives, an unwillingness to reconsider old prejudices, to part with ideological obsessions, to entertain new ideas or to improve new plans.” (Lewis Mumford, U.S. historian)

Thousands of doctors’ and parents’ reports of vaccine injury to VAERS, the VSD, the NVICP. Children’s lab test results. Before-and-after videos. All ignored because of the unreason of people like Paul Offit. So the damage continues. People want it to stop.

That doesn’t excuse threats of violence. But no parent in his/her right mind would risk child custody and jail by committing a criminal act.

It’s been surreal seeing just how willing some people are to use the rantings of the few to smear all parents of vaccine-injured with silly and inaccurate labels like “anti-vaccine.” And when these people represent the public health bureaucracy, trust goes swirling down the wide pipes.

September 15, 2008 at 8:41 pm
(50) passionlessDrone says:

Hi –

This thread has deteriorated from the original theme, but on the very small chance that someone new to this discussion reads this thread, I feel it is appropriate to point out some basic facts.

Dehydration, fever, vomitting, and diarrhea have been hallmarks of growing up as a human child for the last forty thousand years or so. And yet, for some curious reason, there is still considerable debate in the literature about what percentage of children with autism even experienced such a regression. One might think that had getting infected with rotovirus been capable of causing autism with associated regression, this wouldn’t be such a mystery. The death rate from rotovirus has been very remote in the developing world for decades previous to the introduction of the vaccine, so we shouldn’t have to worry too much about the succeptible children being those that succumbed to the virus.

Now if you want to know how many people died in 1950 from the measles, those values are reposted ad naseum by many of the people on this thread and considered rock solid; but if you ask how many people have been regressing from rotovirus, there is a curious silence. Unless we are observing somehthing new, this mandates that a substantial percentage of the parents (and physicians) of children with autism, schizophrenia, MR, or whatever the diagnosis de jour, saw their child regress, but failed to put together the illness with the loss of skills.

Maybe I’m wrong though; does anyone have a link in regards to the frequency that getting rotovirus has resulted in developmental regressions?

Considering that very nearly every single child has had rotovirus at one time or another (or several times from different strains), and that has been happening since the dawn of anatomically correct humans, shouldn’t we have an idea of how frequently it can generate a loss of skills and developmental label of autism, retardation, or whatever?

- pD

September 15, 2008 at 10:27 pm
(51) Sandy says:

Interesting. There are some less serious illnesses that there’s vaccines for, many of these illnesses strike the young or old and also have been around for zillions of years. I think a good poll or topic should be if one seen regression in their child. I did not. Not every child’s autism is related to vaccines, which is why some who refer to the ‘anti vacciner’s’ does not include all with autism but when ever some one says “anti vaccine”, they think of autism. That’s unfair to many with autism.
I’ve been to the VAERS site, many listed are not confirmed medically which is quite a disappointment.

September 16, 2008 at 12:00 am
(52) Ms. Clark says:

PD,

You missed the point. It’s the antivaccine parents who want to terrify by saying that masses of children are “Hannah Polings”. If masses of children are “Hannah Polings” then those masses of children will be better off if they and their neighbors are vaccinated with…. no really…. Dr. Offit’s own vaccine!!! Wow!!!

I don’t think there are any more Hannah Polings than Hannah Poling, actually, and I think she was autistic before that day she got the chickenpox vaccine and the others and broke out in some chickenpox spots and had a fever.

September 16, 2008 at 7:04 am
(53) mike stanton says:

I am assuming that PD meant to write “developed” world not “developing” world when they said that deaths from rotavirus are remote. In the developing world around half a million children a year die from this vaccine preventable disease.

We have seen how the measles vaccination programme has reduced measles deaths in children worldwide from around 750,000 to 250,000 since the year 2000. If Rotateq can do the same for rotavirus, well thank you Dr Offit. If I were him I would wake up smiling every morning, thinking, “I did that!”

I am not so sure about the rest of PD’s post. I think they are responding to the suggestion that autistic regression is caused by rotavirus infection by asking why nobody noticed before now. But I do not recall anyone making that suggestion. Perhaps PD could clarify.

September 16, 2008 at 7:42 am
(54) Kev says:

Nancy says:

“The chief enemy of peace is the spirit of unreason itself: an inability to conceive alternatives, an unwillingness to reconsider old prejudices, to part with ideological obsessions, to entertain new ideas or to improve new plans.”

Which is amusing, given the amount of legitimate study that has gone into looking at the various vaccine hypotheses.

Thousands of doctors’ and parents’ reports of vaccine injury to VAERS, the VSD, the NVICP.

Please watch a video of me submitting a VAERS report that a vaccine has turned my daughter into Wonder Woman. Thats how reliable VAERS is.

Children’s lab test results.

Dr Jeffry Brent, sub-specialty board certified medical toxicologist and active member of the medical school teaching faculty and is an attending physician on the clinical pharmacology/toxicology consultation service at the University Hospital testifying on Doctors Data type labs:

“Well, in truth we don’t (?) urine/leads because the ‘gold test’ is blood/lead so I haven’t looked at many urine/leads in children that I have chelated. So I can’t speak to that in my experience. But I have seen a number of patients now come to me because of these ‘doctor’s data’ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, 100% of the time they’ve been normal.”

“Before-and-after videos.”

During the Cedillo portion of the Omnibus Autism proceedings, Michelle’s mother testified that their home videos proved that Michelle was not autistic prior to her MMR. In fact, when an autism diagnostician viewed the same video, he pointed out several key behaviours that would have led to a diagnosis of autism.

“All ignored because of the unreason of people like Paul Offit. So the damage continues.”

Its ignored because its worthless. By applying scientific reason we can respond to the unreason that says with no shred of evidence that vaccines cause autism.

“That doesn’t excuse threats of violence. But no parent in his/her right mind would risk child custody and jail by committing a criminal act.”

That’s assuming of course that they are in their right mind. I can think of at least one person very, very far from his right mind.

September 16, 2008 at 7:45 am
(55) Kev says:

“In the latest study by Hornig, studying MMR and gastro intestinal distress; only five of twenty five children developed gastro issues after receiving the MMR.”

Thats right pD. Now, one set of people see that as bad science. I see it as just one more confirmation that no matter how hard one looks, one can only find a very small set of people who meet the criteria that may eventually lead to being suspicious of MMR. And then, when one does look at that very small population, one sees very clearly that there is no reason at all to be suspicious of MMR as there is no correlation.

September 16, 2008 at 8:59 am
(56) mike stanton says:

It can be difficult to find reliable accounts of post MMR regression. Parents are quite likely to misremember the past, especially if they have been exposed to extensive media coverage that seems to confirm their memories. Take this study:

“ A review of each record showed that in 13 children the history given by the parents had changed after the extensive publicity about MMR vaccine and autism. Before the publicity the parents often reported concerns early in their child’s life, usually before their first birthday; the current history for the same children recorded symptoms as developing only after MMR vaccination, in some cases shortly after.”
Taylor, Miller, Lingam, Andrews, Simmons & Stowe (2002) Measles, mumps, and rubella vaccination and bowel problems or developmental regression in children with autism: population study British Medical Journal, 2002, Vol. 324, pp. 393-396

September 16, 2008 at 12:09 pm
(57) passionlessDrone says:

Hi Ms. Clark –

Perhaps we missed each others points. (?)

You said:

So a baby with a mitochodrial disorer/disease giving it a predisposition toward developing encephalopathy following a bout of diarrhea could be saved from that fate with the rotavirus vaccine.

Your point, I believed, was that severe diarhea, fever, or other stress from infection could bring about autism (or autism like behavior) for some children with pre existing mitochondrial disorders.

My counterpoint was that if this was a common experience, something that had actually been happening for the past couple of thousand of years to more or less every child on the planet, there should be some evidence of it. Something in the literature, or even old maids tales in regards to getting the a bad stomach condition and consequently loss of behaviors or speech. Shouldn’t we have some evidence of this happening in say 1930, 1950, 1970 or 1980?

Of course, if what has been observed is something new, or with a greatly increased frequency, then the lack of existing evidence from the past makes plenty of sense.

- pD

September 16, 2008 at 12:14 pm
(58) passionlessDrone says:

Hi Mike Stanton -

Your note regarding developing / developed is well taken. Thank you.

Also, I’d state for the record that the development of rotavirus vaccine could save many, many lives in the developing world and I generally think it is a good idea for areas in which death from malnutrition is a real risk.

You wrote: I think they are responding to the suggestion that autistic regression is caused by rotavirus infection by asking why nobody noticed before now. But I do not recall anyone making that suggestion. Perhaps PD could clarify.

Your assesment of my intent is correct; you in fact, got my point!

Ms. Clark said:

However, what is not in question is that a mitochondrial crisis can be caused by a fever or serious diarrhea. I didn’t make that up.

- pD

September 16, 2008 at 12:31 pm
(59) passionlessDrone says:

Hi Kev –

Thats right pD. Now, one set of people see that as bad science. I see it as just one more confirmation that no matter how hard one looks, one can only find a very small set of people who meet the criteria that may eventually lead to being suspicious of MMR. And then, when one does look at that very small population, one sees very clearly that there is no reason at all to be suspicious of MMR as there is no correlation.

As to the difficulty of finding participants, if I remember correctly, their pool was defined by children who had already had biopsies performed; so as to avoid any potential ethical problems.

Here is a short list of some parameters on the children:

13 of the 25 cases had the vaccine before the onset of autism.
16 of the cases had the GI symptoms before the onset of autism.
And five of the cases had the vaccine before the onset of GI symptoms.

Fancy that, a full one half of the children had autism BEFORE they even got the MMR. And, considering that the average age of MMR was 15 months; that means these children were diagnosed with autism very, very early. How, how, how on Earth can you come to a good conclusion on causation if a full one half of your participants had autism before getting the potential trigger? In all seriousnes, can you provde an answer to that question?

For your assertion that it is difficult to find children matching appropriate criteria to be correct, we would need to live in a world where it is difficult to find children that were diagnosed after an age of fifteen months. That is bogus, bogus, bogus. If this is good data, I’m Paul Offit.

As to drawing conclusions from a very small sample set, I’d think you were well aware of the dangers of this by now. What’s more, I am perplexed by your (and everyones) lack of concern with the timing of MMR vs. onset of gastro issues, or autism.

Let me propose a study for you:

1) Twenty five autistic children.
2) Five are chelated.
3) A mix of all children show improvements over the next three months.
4) The remaining children are chelated.
5) DAN proclaims chelating works.

It’s great science!

- pD

September 16, 2008 at 2:40 pm
(60) Sullivan says:

Fancy that, a full one half of the children had autism BEFORE they even got the MMR. And, considering that the average age of MMR was 15 months; that means these children were diagnosed with autism very, very early.

The first part is called a “conclusion”, not a “limitation”. Children with GI issues regress without MMR. Very important thing to point out. Take a look at the comments above on parental memory. Other reports of regression linked to MMR

As to the second part–you are falling for the trap many have left in discussing this study: showing signs of autism before the MMR is not the same thing as being diagnosed before the MMR. The doctors can note that a regression (loss of words or behavior) occured in a child’s chart. They can do this after diagnosing the child with autism.

The sample set was quite large enough to have the statistical power to state that the conclusions of Ulman, et al., were incorrect. In fact, it is good enough to state that the data and, therefore, the methods of that paper were incorrect.

Then, you can add the 20 population studies. Then you can add the 2-3 blood mononuclear cell studies.

Add them all together and ask, “should a peer-reviewer looking at a proposal for another MMR study give the goahead to spend more time and money on this subject?”

The answer is, clearly, no.

People want to act like entire discussion is Wakefield et al. vs. Hornig et al.. The truth of the matter is, millions (tens of millions) of dollars have been spent looking for a connection between MMR and autism since Wakefield’s studies.

September 16, 2008 at 2:53 pm
(61) Sullivan says:

pD:

Here’s a bit from the paper’s abstract:

The objective of this case-control study was to determine whether children with GI disturbances and autism are more likely than children with GI disturbances alone to have MV RNA and/or inflammation in bowel tissues and if autism and/or GI episode onset relate temporally to receipt of MMR.

For emphasis, let’s repeat this line:

“..if autism and/or GI episode onset relate temporally to receipt of MMR.”

Note, part of the study’s goals was a test of whether Autism onset and/or GI onset happened before or after MMR.

By demonstrating that neither autism nor GI issues are correlated with MMR administration, they demonstrated that “Autism+GI issues” doe not equal “damaged by MMR vaccine”.

My guess is that Paul Offit understood this part of the study, so, yes, your comment suggesting that you are no Paul Offit is a valid one.

September 16, 2008 at 4:46 pm
(62) Sullivan says:

pD–

sorry about that last paragraph. It should have been phrased nicer.

September 17, 2008 at 4:10 am
(63) Ms. Clark says:

PD,

The fact that a child who has a predisposition to a mitochondrial crisis can have that crisis caused by rotavirus is not up for debate. It is known that a child with a mito disease/disorder of a certain kind can develop encephalopathy following a bad bout with diarrhea.

The antivaccine parents are the ones who are trying to say that a large chunk of autistic kids regress into autism because of mito problems (they would add that it’s always vaccines what sends the kid over the edge into mental retardation and/or autism… that way there’s someone to sue).

I am not arguing that there are many of these kids. I am arguing that there are probably some mito kids who dodge a bullet if they avoid a rotavirus infection (really who could argue with that? It seems patently obvious to me). Not all mito kids would necessarily develop an encephalopathy and then get a diagnosis of something like MR plus autism, but some might. Not enough to make a big splash in the medical literature…. however, before all heck broke loose with the antivaccine hysterics running through the streets screaming “The sky is falling and it’s all Paul Offit’s fault!!!” parents used to note that hospitalizations seemed to be the precipitating event of a regression, that and something big like moving to a new home or getting a new baby sibling. So it may be that somewhere in the literature there is a case of a child with bad diarrhea who regressed during or immediately-after a stay in the hospital.

What’s the point of arguing that it’s possible that Dr. Offit’s vaccine could be preventing encephalopathy in some rare kids? It’s obvious to me that it’s likely that is has or will. Are you one of them with such a raging hate for Dr. Offit that you can’t concede that there’s anything good about him?

September 17, 2008 at 7:10 am
(64) autism says:

What I don’t understand about the mito theory is this: while it’s true that vaccines can (and often do) cause reactions such as fevers, rash and diahhrea, so do a whole slew of illnesses to which all children (and adults) are prone.

If a run-of-the-mill vaccine reaction is likely to push kids with mito issues into encephalopathy (and/or autism), wouldn’t ANY infection, fever, etc.?

In theory, I suppose, some kids could be pushed over the brink by vaccines simply because they caused the first significant fever they ever had. But with or without the vaccines, no one goes through life without ever experiencing fever or diahhrea!

So, logically, even IF vaccines were the precipitating issue for some kids, it’s almost irrelevant. Without the vaccines, they would catch one or another of the diseases vaccines prevent (measles, mumps, etc.) and wind up autistic a little later.

Which seems to suggest that either (a) we suddenly and inexplicably have a huge number of people with mito issues or (b) we have always had a great many people with mito-induced autism but gave them a different name!

Are we aware of large numbers of kids through history suddenly developing encelopathy or autism after a fever?

Lisa (autism guide)

September 17, 2008 at 11:36 pm
(65) Brad P says:

Mitochondrial disorders are exceedingly rare.

September 18, 2008 at 11:06 am
(66) Gwendolyn says:

I don’t know what caused the “autism” in my children and to be honest I don’t really care because instead of spending all my time devoted to angrily challenging others on vaccines and such, I would much rather spend time with my kids and husband (because they are only this age once!), and make sure that every day I make a positive impression on my kids and lead and guide them. To be honest I consider the autism that so markedly affects my children a way of life in which they have been placed into for whatever reason- whether it be genetics or something different. I’m not saying the vaccine issue is not important, I’m just saying that if I had a choice between my child getting a very serious or deadly disease that might threaten their life or allowing them to get the vaccines, I would choose the vaccines. I have three with an autism spectrum disorder and one with mental retardation. For all we know the vaccines could trigger a recessive gene triggering the autism. Anyway, Mr. Offit, I don’t agree with the threats to you or your family. I think that our discussions can be held in nonthreatening ways keeping Mr. Offit’s family out of the picture. That’s not fair to him or his family. Everyone is entitled to their own opinion- whether we consider that opinion “right” or “wrong” is okay, threatening is NOT. I am a mother, have been for 17 years and I have always preached that you treat others the way you want to be treated…grow up people.

September 19, 2008 at 7:30 pm
(67) Doc says:

“I’ve noticed that often the people who are leaders in a cause (or even a therapeutic model) are more moderate than their followers… who are sometimes pretty absolute in their dedication.”

Thats not surprising really, “Ignorance more frequently begets confidence than does knowledge.”

September 20, 2008 at 2:49 pm
(68) Delster says:

Ok… As Gwendolyn say’s:

Given a choice of a vaccination that can save hundreds of childrens lives every year which might.. just might… have the possibility of causing autism in a very small fraction of a percent of the treated children what do you choose?

I know where my choice is.

For those who belive that MMR causes vaccine… take a look at the numbers. Compare autism rates in treated and untreated as a percentage of each group… not total numbers in each group but the proportionate number and see what you get.

The entire debate has been caused by one very poorly executed, poorly designed study that the media have pumped to high heaven and back.

If anybody still doubts that vaccination is good i only have two words for you “small pox”

September 21, 2008 at 1:09 pm
(69) Cookie says:

I believe the reason researchers are getting such negative responses to being pro vaccine is that many parents have seen first hand their childs vaccine-injuries. Their is no way around the fact that vaccines do cause both neurological damage and even death in some children, of which these so-called experts like to dismiss.

I am a parent of two vaccine-injured children. One with Autism and another with Epilepsy. My child with Epilepsy almost died within 24 hours of being injected with a DPT vaccine. As I have done autism research on my own, I came across a case from the VAERS,(Vaccine Adverse Event Reporting System), which I beleive is part of the CDC, in which it states: Case no. 134548, Report Text; Approximately two weeks post measles vaccination, the pt experienced acute demyelinating encephalomyelitis. The pt detoriorated and died. The cause of death was encephalomyelitis. An autopsy was performed, but the brain was liquified. So much for the safety of vaccines.

I believe there is currently a lawsuit in France against vaccine manufacturers in that country for manslaughter, caused by vaccines.

I also believe that while these vaccine researchers truly believe what they are doing is the correct thing to do, they are simply wrong, and as we continue to see more vaccine injuries, such as the new injuries from Gardisil,it will become more clear how dangerous vaccines are.

September 21, 2008 at 5:35 pm
(70) Sandy says:

Case no. 134548 as a example really doesn’t prove anything about vaccines, but more so this child’s immune system that over reacted to a common infection. If this child came into contact to the actual measles, West Nile or any other viruses and bacteria’s, they’d probably had ended up with Encephalitis. It’s pretty hard I suppose to come up with some test for this, for exposure to some things would be dangerous to these people. But really, that’s what needs to be done, a test for immune issues and reactions prior to vaccines however, this would do nothing if the person is exposed via the public.

October 2, 2008 at 12:16 pm
(71) Dyson says:

I must just say that considering the vitriol and threats one can come across, it’s nice to see a site where a polite discussion can take place.

Regarding the Mito issue – This is a rare genetic problem. It’s neurological manifestations might be triggered, as has been pointed out, by anything that causes oxidative stress and exhausts the mitochondria. This could in theory be any infection or significant illness (hence vaccination could protect against this possibility as has been pointed out) or a vaccine reaction as was conceded in the case of Hannah Poling.

But mito dysfunction is rare, and presumably regression into autistic behaviour does not even occur in most cases of mito. So the risks from vaccines are really minute, and it is wrong to assume, as the anti vaccine groups do, that vaccines need necessarily to do this.

Overall, only a very small subgroup of children would appear to fit into a category of “susceptibles”. I have previously tried to make comparisons with what the expected outcomes might be if children were vaccinated or not against infectious diseases.

Let’s assume that 1% of autism cases are actually caused by say MMR. So how many cases of autism are there? – the quoted rate is around 6 per 1000. Hypothetically, If MMR even caused as much as 10% of these cases, then we could conclude the following:

For every million children getting MMR:

100000 would get a mild fever.
1000 would have a febrile convulsion.
600 would get Autistic Spectrum Disorder.
30 would get ITP.

For every million children getting NOT getting MMR:

1 million get unwell (each with with 3 different diseases)
200000 need hospitalisation
70000 get otitis infection
50000 get pneumonia
20000 suffer a febrile convulsion
1000 get encephalitis and brain damage from measles
1500 get mumps meningitis or encephalitis
1000 would get congenital rubella syndrome
200 would die
50-100 would get ITP

When anyone looks at this balance sheet, how on earth can they come up with the idea that it is better to leave one’s child unimmunised?

November 22, 2008 at 2:09 pm
(72) Tanners Dad says:

Who says Autism Is not Fatal Dr. Julie Gerberding? Warrior Dad Gives Up FIght Takes Sons Life

http://www.causecast.org/member/tanners-dad/blog_posts/406

It is easy to difuse this one. Support research, do neutral research, fund programs for Children, and support parents.

Our side is actually having people die. Once again, for the millionth time, we are not anti-vaccine. We want safe vaccines, Severe Autism erased, and Support for families.

Interagency Autism Coordinating Committee Meeting 11/21/2008: Parents perspective
http://www.causecast.org/member/tanners-dad/blog_posts/407

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