Autism Society of America Displays Inaccurate Billboard
Trifecta!

April is not OK

FirefighterBy Kim Stagliano

Thursday was the 17th anniversary of the bombing in Oklahoma City, OK. I swung by Fox News. Nothing on the home page. Popped over to MSNBC. Nothing on the home page.

How is it that the nation has simply "gotten over" the horrific day when a deranged man who looked a lot like many of us white Americans (you know, not like "terrorists" - insert eye roll) murdered 168 men, women and children?

From the Memorial website: On the morning of April 19, 1995, Timothy McVeigh parked a rental truck with explosives in front of the Alfred P. Murrah Federal Building and at 9:02am, a massive explosion occurred which sheared the entire north side of the building, killing 168 people.

April is also "Autism Awareness Month," although our kids are also forgotten in so many ways. Our government has sat by and calculated how to sugarcoat the unfolding catastrophe that is swallowing families as greedily as the brick and mortar crushed so many in Oklahoma on that terrible day. Autism rates have skyrocketed from 1 in 250 just a few years ago to at least 1 in 88 today. 1 in 54 boys.

If you are a woman of childbearing years you should be quaking in your boots. Autism takes the entire family like a bomb. Nothing is ever the same even where there is joy and happiness. NOTHING is ever the same.

There are Tim McVeighs behind this epidemic. They hide in high places. We've elected them. Memorial1They work in the media. They are physicians. They create laws and medical edicts you must follow. They set policy. They know.

They loaded the truck and haven't taken their foot off the gas pedal yet.

I visited the Oklahoma City memorial several years ago courtesy of autism. We went  to a Chiropractic clinic there, after mainstream medicine had told me to take my kids home, love them, watch them seize and suffer and then prepare for a group home. It is a simple, moving memorial of elegant chairs. I'd like to sit down and rest. Not this month. Not ever. 


House of Cards 200 pixelsKim Stagliano is Managing Editor of Age of Autism. Her new novel,  House of Cards; A All I Can Handle 50 pixel Kat Cavicchio romantic suspense is on SALE for $.99 as an ebook and is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

 

Comments

Marty

"If you are a woman of childbearing years you should be quaking in your boots. Autism takes the entire family like a bomb."

This is disgraceful. Your suggestion that autism destroys families is horrific, and as someone with autism myself, I take offence to this suggestion. It's people like you making statements like this that are scaring women away from me, and make it impossible for people like me to settle down.

Actually, autism is not something to be sad about at all. My mother knew that, and the people that care about me know that. I want to start a family - the ONLY thing that's standing in my way is this rubbish idea that you're putting out - "Autism! BE AFRAID!!"

Wow, this ignorance is disgraceful! Technically, I have asperger's, but when a girlfriend finds out, they always leave me. All you're doing is perpetuating a taboo. This needs to stop.

Families are not destroyed by autism, they are destroyed by people like you perpetuating the taboo of autism.

Benedetta

John Stone;
Because "she" or "He"
Worships at the alter of the NIH and the CDC.

She came here to offer us redemption.

But she does not know to whom she spoke. We are the a lot of Pauls on this website. We have been struck blind with the site of Jesus on the road to Damascus, have we not?

But it was sweet of "her" or "him" to wish to save us from ourselves.

John Stone

Carolyn M

Thanks for pointing this out - I am happy to note my error. It does seem awfully irrelevant, if true (which I very much doubt). If he/she does not think vaccines were implicated in his/her child's case what basis does give him/her for commenting on anyone else's.

John

Carolyn M

In all fairness, qwerty did say that he/she is "the parent of an autistic child" - this was in his/her first post on April 21 at 4:13pm (the last sentence of the first paragraph). However, I did not find any mention of this child having "severe" autism, nor was the child's age mentioned.

Otherwise, I agree - qwerty does appear to run off when pressed to be specific in his/her answers.

Stagmom

Qwerty (the first six keys on a typewriter top line - of course they never use their names) came in with the same tired approach - inquisitive, happy, dismayed, apologetic, snarky and then run run run back to the dugout after a chance at bat in the big leagues. Another strike out.

Back to the minor leagues for him.

Jenny Allan

John says:-
"I couldn't find anything about he/she,(Qwerty),having an autistic child."

Qwerty's complaint on the Gorski blog was that AoA was collectively unsympathetic!! I find this pathetic, and of course, this particular blatant lie calls everything else Qwerty claims about him/herself into question.

Carol

It's no doubt best not to respond to qwerty's posts, but if one must, then I'd draw him or her out about his autistic child.

I was in a restaurant the other day and saw a 3-year-old child in a wheelchair. He was one of those incandescently blond children, physically perfect, except that all he was doing was moving his head from side to side and making noises. He looked sturdy and fit; this wheelchair deal seemed new to him. When I was younger, disabled children looked physically different, like there was a reason for it.

I can only imagine how you'd feel if you did something to your child, albeit with the best of intentions, which damned him to a life of pain and frustration.

John Stone

Jenny

In a brief check on Qwerty's previous posts I couldn't find anything about he/she having an autistic child.

John

Jenny Allan

Carol
Also from a Querty Orac blog response (on the subject of AoA-what else!):-
"I found it particularly irritating when some folks replied with what I call the "cut-and-paste" attack, which includes only scant original writing (usually the insult directed at me) followed by copied text, links to websites, videos, blogs and obscure "scientific" articles."

Yes, those trolls who devote their time to rubbishing AoA and other vaccine SAFETY promoting websites, (NOT anti-vacciners; I resent this insulting blanket term), absolutely HATE having their own weasel words cut and pasted alongside properly peer reviewed relevant scientific papers and other recorded information and evidence.

Keep on 'cutting and pasting' and presenting the evidence folks!!

Jenny Allan

Carol
From another of Querty's comments on the same Gorski blog:-

"I actually DO have a child that is quite severely autistic (approaching 4yrs old) and mentioned this on the AOA string of posts, but even that doesn't seem to carry any street-cred with folks over there."

Isn't it strange? Querty fails to mention this important detail on this particular thread. Even stranger, this unfortunate child is referred to as a 'that' rather than a 'who or a whom'. This goes deeper than a failure to observe basic rules of grammer, particularly if Benedetta is correct and Querty is female, and is therefore claiming to be the MOTHER of an autistic child!

Benedetta

Carol;
I was her favorite!
So this person is fuming.
I wonder how fuming she would be to a docotor that was trying to leave with his hand on the door knob, hardly listening when I was trying to tell him my son was running 105 temps,and could we divide up the shots.
And him telling me that shot had to be today -- today, the nurse will do it today!

Six hours later he has a stroke.

Fuming Qwerty - needs to over haul her fuming gasket scale, because it is off a bit, don't you think.

Carol

Posted by qwerty on another blog April 24. Judge for yourselves whether this is an accurate characterization of the exchanges below:

"Orac,

My first time commenting on your blog.

Couldn't agree more with your post. I happened upon Kim's article on AOA the other day and found myself sitting there fuming that she would use such shameless rhetoric (I knew nothing of her background). Kim seemed oblivious to the fact that her rabid anti-government sentiment and blind willingness to harm others by promoting an anti-vaccine agenda would've probably resonated with McVeigh. I posted a few comments (always trying to remain respectful and keep an open dialog with other posters) -- needless to say, all hell broke loose. The level of hatred and outright disrespect for the faintest whiff of real science was remarkable. Not all was bad however. There were a few nice exchanges with some concerned parents, and I enjoyed my interactions with them."

Carolyn M

qwerty -

Your reply to me appears to be a bit unclear. It seems to me that you have the impression that the six sigma quality improvement technique requires increased sample sizes. This is most definitely not the case.

In order to achieve six sigma (or better) quality, you do not just eliminate defects in the process. You start at the design stage. In the case of a vaccine, harmful or potentially harmful ingredients (such as neurotoxins) would never be present in the vaccine - they would have been eliminated in the design stage.

The core requirement is to satisfy the needs of the end user. Please note in the case of vaccines, the end user would be the person who would be administered the vaccine, not the vaccine manufacturer.

Hera

Hi Qwerty,
Yes: being able to identify who is likely to have a dangerous reaction to which vaccine, would make a major difference in many lives.
(By the way,some studies show that the rate of autism is much higher for people with a family history of autoimmune disorders. I'll see if I can find one of them for you.) Family history may be one starting point to identify those at risk.And of course as you say, tests are available for many types of primary immunodeficiency.Time to fast track those which aren't readily availabe, perhaps?
As you pointed out, the inserts on vaccines often specifically state that the products are not considered safe/or tested on those with altered immune function.

On a different note,what I do find interesting in most studies which show very limited connections to side effects; is making a quick check to see if the sample used for data is actually representative of the population being studied..
Probably one of the quickest, easiest ways is checking whether the rate of autism the study sample has, is the same as in the population at large.
I.E. If the autism rates in the study aren't what we know them to be in the general population, then the study can't accurately pick up neurological side effects, and isn't valid.

Qwerty needs what?

Qwerty;
I am not sure what you are after, what you want to know? What is driving you?

Are you being told by the CDC and the NIH this is not possible, but you are still thinking maybe it really is?
But being a scientist you ??? came here instead of looking at the large data base of science so we could shorten you search by pointing out to you were you should look?

Or have you come here to tell us that what we saw - our observation of cause and effect was really "Correlation does not imply causation."

You want open dialogue so help us out can you pinpoint exactly what you desire?

Natasa

"The number I've heard thrown around research circles (i.e. in seminars etc) is that vaccine makers like to see 3million doses with no correlation with disease before it is deemed totally safe. I think there are approx 20million kids in the US under the age of 5."

Depends what they mean by 'no correlation with disease' and whether that lack of correlation includes those thousands upon thousands of unreported/ignored cases.

The number I've heard thrown around parent circles is that thousands upon thousands see their children get injured by vaccines. Those injuries go mostly unreported, and don't get to be counted.

So it really boils down to anyone placing greater faith on numbers 'thrown around' by vaccine makers versus those numbers witnessed by those standing foot away from the crime scene.

Your insistence on unreliable sources is getting boring.

Gosh imagine a police detective ignoring numerous reports of assaults coming from the same area, refusing to interview victims and family member who witness the crimes, on the basis of police crime statistics for the area!! It would be ridiculous if it wasn't tragic.

qwerty

@ Carolyn M,

I just re-read my comment to you and it certainly was poorly written. My intention was not to suggest that the intussusception seen in an extra 1/10000 kids was an acceptable "rare" event. Quite the opposite. I was using this as an example of what was deemed unacceptable and therefore needed to be replaced by a safer alternative. I referred you to clinical data to see the incidence of what ever specific injury you were interested in. Though, I have a feeling you would not be happy with the clinical data, since these studies often involve far less than 100,000 children (split into a placebo group and a vaccine group), so they wouldn't have the sensitivity to even detect anything more rare than 1 in 100,000. The number I've heard thrown around research circles (i.e. in seminars etc) is that vaccine makers like to see 3million doses with no correlation with disease before it is deemed totally safe. I think there are approx 20million kids in the US under the age of 5.

Carolyn M

qwerty -

You used "an additional case (or two) per 10,000 vaccinated children" to define rare in relation to serious complications from rotavirus vaccine.

This is actually NOT rare at all.

There is an industry standard for quality called six sigma. For this standard, 3.4 per million "out of spec" is considered closer to rare. Note that the previous figure is the practical application of six sigma. The theoretical number is actually 2 per BILLION. "Out of spec" can be used in this discussion to refer to injury caused by the vaccine.

Please note that the theoretical six sigma is actually more appropriate when referring to such substances as toxins. Also, note that some consider six sigma to be not nearly stringent enough - particularly for such industries as electronics, chemicals, pollution control and medical products.

I find your tolerance for injury to our children most troubling. Quality standards for things like cell phone chips should not be more stringent than safety standards for medical products which are routinely given to our children.

qwerty

Hi Hera,

I understand your point about questioning the prevalence of immune deficiency in the population and the general concern that some of these kids may have been treated with the "one size fits all" vaccine schedule. In the end, it comes down to having clear tests to identify these children so that they can receive special consideration by physicians. Aside from looking at T cell counts (the #1 measure of immune deficiency during HIV infection), I really don't think there are any standard tests that are ROUTINELY used to assess immune function by pediatricians or general practitioners. There are MANY assays we use in research laboratories, but as you know much of what is done in research labs is not yet approved for clinical applications. In the end, physicians are ultimately looking at only a few major risk factors as indications that a patient may be immune deficient: 1) being HIV positive, 2) being elderly, 3) currently taking immunosuppressive drugs (i.e. to prevent a organ transplant from being rejected), or 4) undergoing chemotherapy for cancer treatment. Your typical kid with no overt signs of immune system problems is NOT going to set off any red flags in the pediatricians office.

If you're interested in immunodeficiencies in the general population, one of the world experts is a guy at The Rockefeller University named Jean-Laurent Cassanova. Here is a link to his lab's research:
http://www.rockefeller.edu/research/faculty/abstract.php?id=323

4 or 5 years ago I heard that someone had gotten a research grant to study patients admitted to the hospital for treatment following severe adverse vaccine reactions, in the hopes that they could generate some data that might point to why these patients had such a negative reaction, while others were fine. This concept of understanding the INDIVIDUAL and not just applying a standard treatment protocol to everyone is the main idea behind "personalized medicine", a common buzz word we hear in research and one that has been mainly driven by the recent ability sequence a person's genome for a relatively low price. The main idea is that there may come a day that we can tailor a treatment (in this case, vaccination) to the individual based on their own genetic make-up. Probably the best example of this in current practice is the use of the blood thinner drug, Warfarin. Many people need blood thinners, but it has been long recognized that different people exhibit significant differences in responses to the same drug dose. It's now more clear what the genes responsible for this difference are, so you can check these genetic markers in each patient, then adjust the dose accordingly. Perhaps this is the sort of thing you hope to see being used for vaccination some day.

Benedetta

Qwerty:
That was an honest response to my question on Kawasakis.
There is also something called atypical Kawasakis too, or incomplete Kawasakis.

My daughter developed full blown Kawasakis - six or seven weeks after her fourth DPT shot. After running 105 temp with all of her shots.

My son develop atypical Kawasakis six or seven weeks after his third DPT shot - on top of the fact that he basically suffered a stroke six hours after receiving his third DPT shot.

Atypical Kawasakis - kept reoccurring for years after. That is my observation- not the medical doctors who denied anything was wrong - except the occassional honest dialogue not put down in medical records. In the medical records sometimes they wrote it down but mostly they did the catch all phrase "it's a virus".

A rare event? Or a very under reported event- or something unrecognized for what it truly is? Along with doctors that do not want to ruin their careers.

If you are going to just look at the science - you cannot do that when there is dishonest in the system that you are looking at. There is the rub!

And even though these children with hyped up immune systems - proven by having Kawasakis in the first place- The advice given is to still complete their vaccine schedules. Unless they recently had IVIGs because that would make the immune system not react to the vaccine - they are on the IVIGs because thier immune system already reacted too much to a vaccine. Does that make sense?
Does the song "Around and Around the Mulberry Tree" come to mind?

When they give a rabies shot, they have to give it on one side of the body only, and on the opposite side of the body, they give the patient an IVIG injection. What a wonderful vaccine - observation only here!

I could tell you about how my son, my daughter and my husband --- have after each vaccine from the DTP-- DTaP had reactions that were esculating, but was ignored.

and how I expect that the tetanus shot I took also had the pertusis shot lead to my immune system attacking my thyroid but not my pancreas (which it could have just as easily done) but these are rare events? Don't we have epidemic of thyroid and diabetics in this country?

Sceince came from observing, so observe those telling you what they have observed.

Hera

Hi Qwerty, thanks for your response.
By the way,Disclaimer ( as hopefully should be obvious) all my comments are in the interests of discussion, and are not to be considered medical advice which should be obtained from consultation with a knowledgable doctor !
Re primary immunodeficiency there are a lot of government websites out there; the interesting thing is that according to these websites, the kind of problems you would expect these children to have include things like chronic ear infections, respiratory infections etc, Some sites also talked about discuss the dangers of live virus vaccines for some of these children.There are actually break downs of which vaccines are and are not safe for these children. Apparently these kids can catch the illness that the vaccine is supposed to prevent.One site of a sufferer talks about having chronic measles infections for years. A peer reviewed journal article talks about death of a baby following TB vaccination.
Yet another site talks about brain inflammation as a reaction to live virus vaccination.
What is particularly interesting is that some of this sounds very familiar when compared to many of the "anecdotes" I hear.Chronic ear infections, on antibiotics, never the same after the MMR;and of course at least in the past,we hadn't been able to test for it.So the question is; how many babies did we vaccinate who reacted in the ways being described here? And was the "brain inflammation" the same as is described in children who ended up with an "autism" diagnosis?
I'd be interested in your thoughts on this.
( By the way have you read passionless drones blog? Some discussions on peer reviewed journal articles that you may find interesting.)

For qwerty

qwerty

This is classic troll technique - occasionally we see health officials do it too. You concede something very important and then you pretend it wasn't anything. And here you are waffling about bureaucratic definitions of immune deficiency, which has very little to do with anything. A basic problem here is evident, and typical of vaccines science, that a product is only trialled on healthy people (infants) and then wheeled out for everyone else, indiscriminately.

You point out one obvious limitation of VAERS: another is that passive reporting may only throw up 1% of the cases (particularly given institutional hostlility to reporting vaccine incidents), but the number of reports in this instance seems very high.

As to Cochrane I think you will find a lot of weasel wording in these papers (they, after all funded by the UK Department of Health!), but this is the bottom line - that after 40 years of the product's history there are no adequate safety studies and (incidentally) several of the autism ones are very bad.


They are btw free of access if you want them:

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004407.pub2/pdf/standard

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004407.pub3/pdf/standard

But is no good them saying they don't support a connection with autism when they have also indicated that they are too poorly conducted to tell. And this doesn't even address the issue of why after 40 years and thousands of studies we haven't got anywhere, and cannot fund viable studies.

As ever in your latest comment there is implied the ill-mannered assumption that you are the only person who have ever read anything, or understands anything.

qwerty

@MaxW: I tried to access the Cochrane review you referenced, but wasn't able to download the full report without payment. I hesitate (as should you) to draw any sweeping conclusions from the abstract alone.

Your statement about Rotavirus vaccination and developing countries is not accurate. Rotavirus is THE #1 cause of infectious diarrhea across the globe (with a parasitic infection called Cryptosporidium following as a close second). It is true, however, that a rotavirus infection is probably less likely to lead to death in children living in developed countries since they often have easy access to emergency care and clean water. Finally, individuals living in developing countries are NOT considered immune compromised....unless they are infected with HIV and progress to AIDS.

As for the VAERS data you reference, this should be interpreted with caution as it's really not intended to represent a measure of vaccine safety. One would hope that any childhood death would be followed by a full autopsy and medical investigation. If, as you suggest, the deaths were caused by the live Rotavirus vaccine, presumably a trained pathologist would easily recognize this (i.e. either gross intestinal pathology, disseminated viral infection in other tissues or an uncontrolled immune response resulting in multiorgan failure).

@WhoIsConsideredImmunodeficient -- I don't think of Kawasaki's disease as an immunodeficiency, but rather more of an over-active immune response (or autoimmune disease). But I don't think the cause is well understood. Interestingly, based on the info I'm looking at on RotaTeq, they followed infants receiving the vaccine for 42 days to check for Kawasaki's. In the 36,150 kids that got the vaccine, 5 developed the disease, compared to only 1 from the 35,536 that got the placebo. So there was an increased risk associated with vaccination.

@Carolyn M -- You're right, the term 'rare' is subjective (but then again, so is "injury"). I used to generically, but I can be more specific. Since we were talking about Rotavirus, why don't I use this as an example. Prior to 1999, the vaccine against rotavirus given in this country was RotaShild (made by Wyeth), but public health data suggested that this vaccine was linked to a serious obstructive bowel disease, causing an additional case (or two) per 10,000 vaccinated children. This was considered unacceptable and the vaccine was pulled from the market. Its replacement, RotaTeq (made by Merck) is now the standard. NOTE: I HAVE NO FINANCIAL INTEREST IN EITHER VACCINE OR COMPANY. I do not work for pharma. If you want specific numbers for each type of injury, my suggestion is that you look at the product insert for the particular vaccine you're interested in. You'll be able to see the clinical results from the vaccinated vs placebo trial, and they report the number of children that presented with various complications.

Carolyn M

qwerty -

You stated: "I certainly believe that it's possible for a child to be injured from a vaccine but I believe that this is a rare event,..."

Please define "rare" - numerically. The use of the word "rare" is subject to wide interpretation without further definition (again, numerical definition).

who is considered immunodeficient

Querty:
Are you familiar with Kawasaki's disease?
Would those patients be considered to have immunodeficiency?

MaxW

querty

I wonder what parents would think about having MMR if they knew that Cochrane had twice reported (2005 and 2012) "The design and reporting of safety outcomes in MMR vaccine studies, both pre- and post-marketing, are largely inadequate"?

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004407.pub3/abstract

Isn't it also the case in regard to Rotateq that the place where it would be most helpful to prevent diarrhea ie the third world is also where infants are most likely to be immune compromised due to poor living conditions (and where the fewest checks are likely to be carried out). I note that in the US Rotateq in its 6 years has accumulated 221 associated deaths on VAERS.

http://tinyurl.com/3xstxj

qwerty

Hi Hera,

Thanks for the compliment. Regardless of what other people on here might suggest (like Benedetta), my comments are certainly not intended to mock or belittle anyone. In the end, we're all concerned parents and I think that deserves respect and consideration. And, I feel very strongly that an open dialog is the best way for all of us to make progress -- which is really why I am here.

There's no such thing as "absolute safety" for any vaccine, drug or procedure. Your analogy with peanut butter is a good one (I usually use orange juice in mine analogy, but I like yours better!). I certainly think it's possible for a child to be injured from a vaccine but I believe that this is a rare event, and I believe that folks in medicine and research do everything they can to ensure that this doesn't happen. I'll be the first to concede that there are MANY examples of times when we thought a drug was safe and it turns out we were wrong. Sometimes this is because we just didn't have enough data (have you ever heard of the drug trial for TGN1412?).

I'm not sure which studies on primary immunodeficiency you might be referring to (there are many), so I would really be interested if you could post some of the references (I'm sure many people would be interested). Certainly if someone has a primary immunodeficiency, their particular health status should be carefully considered before ANY vaccination. In fact, I just looked over some of the vaccine product inserts that I've saved from my own children's vaccinations. The one I'm holding right now (RotaTeq; which is a live vaccine) specifically states "No safety or efficacy data are available for the administration of RotaTeq to infants who are potentially immunocompromised". So, basically, proceed at your own risk! If a physician gave this vaccine to someone he/she KNEW was immunodeficient, I imagine it would constitute negligence.

So, the question is how do we know if someone is immunodeficient? To be honest I'm not sure how prevalent primary immunodeficiencies are in the general population. Even the term "primary immunodeficiency" is actually quite vague. Usually, the immune deficiencies that are diagnosed in the clinics are the most severe (because they are obvious), and these children suffer severely from "opportunistic" infections that don't affect at typical child, often times dying early in life.

Benedetta

Here Hera
This is the email qwerty left

[email protected].

Your blog was very thoughtful and qwerty did want to open a dialog.

But don't be surprised that qwerty insults your intelligence as well as you surprising qwerty that you have any.

I can imagine easily that people like qwerty await the day eagerly when they and they alone with no competition are considered the smartest people in the world. With 1 out of 6 or is it now 1 out of 2 kids with learning problems that day is fast approaching.

Hera

Hi Qwerty,
Firstly i would like to compliment you on coming to a site where you know you views will be challenged; that takes a fair amount of courage; Thank you.
It seems though that for those who take your position;a basic requirement is to believe that no baby or child or adult could ever under any circumstances be severely injured as a reaction from a vaccine.
( Otherwise, the argument is only about numbers, and you would have to communicate here with the belief that it is possible/likely that at least some of the people here are describing real things that actually happened to their children).
Given that I am assuming you believe in the absolute safety of all vaccines for all babies,I would like to ask if you have been following the relatively new information coming out on primary immunodeficiency.
A research topic for you; is it safe for babies with some types of primary immunodeficiencies to get live vaccines( I am asking here for conventional medical beliefs, not fringe stuff). What kind of symptoms would these babies/children have that would identify them? According to conventional medical beliefs what kind of effects would live vaccines actually have on babies with primary immunodeficiency?
And how common is primary immunodeficiency in the general population?
As a scientist, I would be very interested to hear your thoughts on this matter.Again, I am requesting this given that you have expressed interest in the topic. In answer to your own question ; at this point it is unlikely that someone could produce a study that convinced me that every vaccine is always safe for every human being.
Of course, I wouldn't believe a study that said peanut butter was safe for every human being either.Would you?

But percentages; yes. If you have studies that can identify other major environmental causes for the increase in autism, I am always willing to keep an open mind.
I am a kind of results type of girl though; the obvious resulting expectation is that as a follow up to what ever appropriate changes were then made, a major change would occur in incoming special ed rates.
( Not interested so much in changes in autism diagnoses; we all know that with the new changes in the DSM coming, we are going to neccessarily see a "drop" no matter what actually happens to the true rates in the population.)
I'd be grateful to hear your thoughts and response.

Benedetta

John;
If it turns out that x or y is some lowly science teacher that has been educated - day after day -- pounded in by professors in college - or even a regular little young, idealistic nursing student--- that after her education---or even during-- comes on here and starts a discussion on such a one thing??? Well, I appreciate the efforts by everyone here for I know what they do at these so called institutions of higher learning - personally.

And from my own daughter just a few years ago -- but someone like Qwerty - sounds more like something from the government -- or even one of those very professors that thinks they know ---when they don't know.

Thanks John for the comment.

John Stone

Benedetta

Of course, you put finger on why "qwerty" is in the end personally offensive, because the bit of the narrative which is being left out is the eye witness experiences of parents. Instead of proper medical practice we then get all this epidemiological whimsy - as if everyone is stupid. The actuality is that when vaccine damage awards have been made they have made on an individual basis, so epidemiology doesn't actually come into it. The awards were made because the vaccines had these effects.

I don't like to get too personal about these things but when x or y comes on to announce in so many words that they really understand these things, unlike the silly parents, it really won't do.

John

Natasa

Btw the severity of Autism symptoms in HIV+ kids correlates to their CD4 status and viral load.

HIV load is well known to shoot up following vaccinations. Go figure.

Natasa

Qwerty, that question of causal relationship can be answered in two ways (maybe more): one is to look at it in a roundabout way, where other inflammatory/infectious diseases lead to change in behaviours and neuro-linguistic development. Interferon therapy-induced personality and cognitive changes is one excellent example, but Paediatric NeuroAIDS is even better and hits closer to home, as many untreated children, well in the absence of full blown AIDS, develop symptoms of autism (you may be aware of Pizzo-Moss-Wolters studies? Some are referenced here http://autismcalciumchannelopathy.com/HIV_and_Autism.html).

In fact neurodevelopmental consequences of NeuroAIDS in children are IDENTICAL to idiopathic autism and include language, social and communication impairments. Those studies are priceless, anyone who knows autism should read them, as they go right to the heart of symptomatology and even describe regressions into autism.

That is one proof enough for me. Of course genetic make up (as well as other environmental circumstances? – secondary infections?) will determine which of the HIV+ children will develop neuro-developmental issues.

The other way to establish causal relationship is in the same way that causal relationship was established between HIV and AIDS – ie through antiretroviral TREATMENTS. If we use anti-inflammatory, anti-infectious and immune-modulating treatments and they reduce symptoms of autism, there you have the second proof. We know this is happening already from clinical experience (call it anecdotal evidence ☺ ) but yes needs to be rolled out on a larger scale once subgroups are sorted out.

Oh yes and btw antiretroviral treatments, when successful, most often do get rid of autism symptoms in HIV kids.

(and may I remind the causal reader that there is nothing else to ANY autism apart from surface symptoms ;)

Benedetta

How about a real effort to find the truth.

Untill that happens ---

Benedetta

Qwerty,
I don't trust you in so many ways, you make me very uneasy.
But as far as studies, that is not the problem. The problem is the extent vaccine injuries are being covered up and there is no studies that will show the truth at this time. So where to put the money?

It appears no where, at this time.

But if a government really wanted to know:

How about cross the board interviews with parents that have witnessed their kid's vaccine reactions, or regression after a vaccine? Blood test for ANA, SED rates, L-carnitine levels. Maybe more thought on the research or mitochondria cytopathy in the Complex I and Complex III should be given so we would not have to slice a piece of muscle off of a small child.

Didn't Autism Speaks - was her names Dawson that said they had collected medical records of young kids with autism but didn't have the money to go through them to see similiarities in order to finish the study????

How about adults that have vaccine injuries - oh, there is enough of them out there - and compare their labs to kids with autism.

How about more case studies as in the case of Dr. Wakefield for more than just the MMR shot. O, that is right after watching what they did to Dr. Wakefield - how truthful would other doctors be?

What happens to a govenment that loses the trust of it's people?

How about case studies as in the case of Dr. Wakefield for more than the MMR shot.

How about

qwerty

Natasa,

I totally agree with you that research into autism biomarkers would be highly valuable not only for diagnosis, but also as important parameters to measure the benefit of different treatments.

You have misstated (or misinterpreted) my statement about lung cancer and smoking. I did NOT say that 80% of smokers will develop lung cancer. What I DID say was that of all lung cancer cases in this country, approx 80% can be attributed to smoking. These two statements are VERY different. The study I am referring to is probably the most famous "case-control" study of the 20th century, carried out by Sir Richard Doll in the early 1950's. It was quite an important study if for no other reason than that it was the first of its kind to show a link between environmental exposure and disease (a link many scientists and doctors denied and one that was not seen in animal studies...sound familiar?). It should be something that many of the people who support a link between vaccines and autism should really take the time to understand.

Lastly, I don't disagree with you that there's strong evidence that at least some children with autism have various immune disfunction. You take this to mean that immune disfunction may have caused the child to be autisic. Perhaps, but it could also mean that the same underlying problem (be it genetic, environmental or some combo of the two) caused both the autism and the immune disfunction. In order words, the two might be associated with each other but don't have a causal relationship.

Natasa

PS – re the smoking-lung cancer analogy – when you say that 80% of smokers develop disease (source?) does that apply to short-term smokers, those that give up after a while, or only those who are exposed to smoke for years? How do statistics of lung diseases compare between light smokers versus those on packet or more a day? My point really is what would happen if we kept vaccinating all children into oblivion year after year? How many of us would develop neuroimmune pathology after say 10 years of repeated, regular vaccinations? Not possible to carry out of course, but something to keep in mind when bringing up smoking-cancer analogy!

Barry

Kim,

Absolutely brilliant analogy. My vaccine injured child ( ..or autistic, as the doctor who vaccinated the B'Jesus out of him calls it) is the victim of a senseless crime. And your article very clearly identifies the perpetrators of that crime, the "Tim McVeighs" who are currently so desperate to cover up what they know that have done.

Qwerty,

Not exactly sure why people are wasting key strokes responding to your sentiments on this article. I'd be surprised if you actually have a PhD in anything, because apart from the fact that most PdD's would never lower themselves to what you are doing here, none would ever speak so vaguely about the science that supposedly understand so well. They would be explaining the science in painstaking detail, since defending that science, by explaining it to the rest of us us supposedly the reason why you came hear in the first place.

Nice try qwerty, but your not the first troll to come here, pretending you be something you're not as a thinly veiled attempt to lend credence to what you say.


If you want to be taken seriously, then by all means provide and then explain the scientific PROOF, which supposedly shows than any vaccine has ever prevented a disease of any kind.

Natasa

Regarding autism research funding in my opinion most of it should go a) developing/confirming biomarkers b) TREATMENTS – i.e. clinical trials tailored to specific subgroups (based on biomarkers). What we need to understand first and foremost is the abnormal physiology, and then finding ways of correcting those dysfunctional pathways. There is so much we know already that should be confirmed and rolled out on a larger and more targeted scale. There are many treatments already used with success in autism – we need to sort out responders from non-responders and apply what we find to treating others. There are also many ‘novel’ treatments out there that are successfully used for diseases with similar pathologies that should to be trialled in autism asap.

There are many diseases that can be treated today with large degree of success without fully understanding their original causes/aetiology. Finding the original causes (be it genetic susceptibility or further environmental insults and triggers such as vaccines) would be fantastic in terms of stopping the epidemics, but would not contribute much, if ANYTHING, towards actually providing treatments to those who are affected now or in future. For that we need to crack the physiology, figure out what is dysfunctional at the cellular level, which might be very far downstream and not any longer linked to the original insult (for example look up autoimmune pathologies triggered by infections, where the original agent has cleared long ago…).

http://www.treatingautism.co.uk/why-biomedical/

Side-note to QWERTY:

not sure if you are aware of findings of chronic inflammation immune and autoimmune pathology in autism: microgliosis, abnormalities in cytokine/chemokine levels in blood, CSF and GI tract, mast cell activation, autoimmune reactivity, odd goings on with NK cells in lymphocytes, abnormalities in brain stem/autonomic nervous system linked to the immune system, abnormalities in levels and activity of infectious agents and their by-products in autism (high LPS levels in the blood, higher levels of polyomaviruses in the brain etc.). Some of the references are listed in the link above, but there are hundreds more. Going back to pregnancy and maternal factors, again there are findings of maternal immune activation, high cytokine levels in the placenta and so on --- findings indicative of auto/immune/infectious factors (whether genetic or not is irrelevant in this context). Knowing as we do that vaccine act as immune stressors and are capable of triggering cytokine storms and long-term immune-mediated pathology, and are perfectly capable of reactivating latent infections and introducing novel replication and recombination-competent contaminants and half-dead vaccine-strain pathogens that can easily escape compromised immune systems (see latest by paper by Manzardo et al.), wouldn’t you agree we should really take this all into consideration and start talking about vaccines as possible triggers, or at least as contributing factors - agents that make bad situation worse? (Do I need to add that not everyone who smokes develops lung cancer?).

Natasa

qwerty@ "Let's ... move forward with understand the genes involved in these behavioral diseases."

You haven't even heard of Hallmayer study, have you? Or are you choosing to ignore it on purpose?
http://www.ncbi.nlm.nih.gov/pubmed/21727249

Lord Moloch

qwerty

You took up the issue of people here being insufficiently deferential to the Bill and Melinda Gates Foundation. The point is perhaps that philanthropy does not always work and you wonder whether it is genuinely philanthropy when people bang on regardless. And the human cost can end up well beyond anything that can be read on a balance sheet: lives destroyed and wiped out at the stroke of a pen, or a piece of bureaucratic rhetoric. If you are not properly attentive to the negative consequences of actions, even the generalised claim of the "greater good" is chimerical.

qwerty

Kim -- thanks for sending along the info regarding the conference, book and seminar. I can't promise I'll make it around to the book, but I've already looked at the conference and will take a closer look soon.

qwerty

Dear Doctorl and Lord Moloch,

You both make demands of me as if I'm some sort of lowly employee obliged to bend over backwards to appease you. I'm commenting on this blog with genuine interest in dialog, not to be baited into arguments by narrow-minded bullies.

Doctorl -- I choose to remain anonymous precisely because of people like you. As I'm sure you would only use specific information about me to make your taunting more personal. I notice you use a pseudonym as well. I stated my credentials only because I think they qualify me to talk about vaccines and the human immune response. I wonder what your credentials are. Thanks for your offer to "review my work" but it's already been scrutinized by the scientific community before it was allowed to be published.

Lord Moloch -- Your initial post didn't have a single question addressed to me, so I assumed you were merely expressing an opinion and that I need not reply. I didn't realize I was obliged to respond to all your comments in the form of a point-by-point rebuttal. I read the paper you sent along (and several others by Puliyel) and found it interesting. Based on what I read, it sounds like he fully supports adding many of the basic childhood vaccines to improve child health in India. His concerns, which were clearly expressed in the article you sent along, are that there needs to be more consideration given to weighing the costs vs benefits for large scale vaccination programs in countries that are severely strapped for cash. I'm not a public health expert, or an epidemiologist, so I can't comment as to whether his figures or stance is accurate.

qwerty

Tim and Sarah -- thanks for keeping the discourse on this thread civil and engaging! I thought a lot about both of your comments as I spent the day with my family. I'd like to address a common element that I think both of you touch on -- funding for autism research. Before I get to that, let me address something Tim raised.

Tim, your commitment to being involved in Minnesota legislation is commendable and I can relate to your frustration with ignorance in the political arena. I understand that you'd like for me send a comprehensive list of public health studies relating to vaccines, I can do that if you'd like, but it takes some time to put this sort of thing together (as I'd like it to be more than just a list, and instead include a explanation of each study and resulting data). Ultimately, that sort of list will be comprised of mainly studies that fail to show a link (i.e. negative data....the least exciting thing to publish). This is different than proving that vaccines DO NOT cause autism. Negative associations are nearly impossible to prove. I'm guessing you're probably already familiar with some of these studies and will undoubtedly have many criticisms of data, and that's totally fine. Scientists criticize the hell of out each others work all the time. Criticism is good, so long as it is rational and backed up by facts. I guess my question for you (and other parents reading this post) is do you simply feel these studies are flawed and you'd like to see more done in this area, or do you actually feel that there are conclusive studies showing a direct link between vaccines and autism (if the latter, could you please send me links to these?). Maybe another way to phrase this question is the following: what would be the experiment that -- if conducted correctly -- would settle this issue one way or another for you? You mention the "much awaited" vaccinated vs. unvaccinated study. If you're proposing a controlled clinical trial in which a large cohort of children would be left unvaccinated, such as study would never pass the ethical litmus test to get IRB approval in this country (regardless of your feelings on this issue, this is the reality). Perhaps you're proposing a case-control study which is purely observational (much less expensive than a clinical trial). The problem with applying an observational design to explore a causal relationship between vaccines and autism boils down to statistical power. Even in situations where the association between a risk factor and a particular disease is very strong (like smoking and lung cancer), not all people will develop disease, so the study has to include enough people such that a causal link can be seen if it exists. For smoking and lung caner this was pretty easy, since over 80% of lung cancer cases in this country could be attributed to smoking. When you consider the relatively low incidence of autism (approx. 1.2% of the population), and the apparent weak association with vaccination (i.e. not all vaccinated children develop autism), observational studies become problematic. Where you may have an argument is if you could find a small subset of autism (clearly defined by specific diagnostic criteria) that you suspect is strongly linked with vaccination. This might improve the chances of finding a causal relationship.

OK, moving on. In my last post I did not mean to suggest that all autism public health research should be halted in favor of pursing genetic studies. I think the ideal situation is some mix of the two, but we have to be realistic -- the pot of money is small. The TOTAL NIH budget for 2012 was approx 30 billion. Compare that with the cost of the Iraq war which is expected to approach a $2 trillion price tag. That $30B pot gets divided amongst the 21 different institutes of the NIH, of which the biggest dog at the food bowl is the National Cancer Institute, gobbling up approx $5 billion (which I have no problem with). Each of these institutes then hands out their respective pools of money to researchers by way of highly competitive grants. Now I'm not entirely sure who funds the most autism research in this country, but I'd bet it's some combination of the National Institute of Mental Health (NIMH) or the National Institute of Environmental Health Sciences (NIEHS), whose 2012 budgets are 1.5 billion and 0.7 billion, respectively. This may sounds like a bundle of cash, but it disappears quickly. Have you ever checked out the NIH RePORTER website? It's a great way to see exactly what grants have been awarded given to study all aspects of Autism (from public health, to genetics, to education). Type in "autism" and you're good to go. You can see which researchers are getting the money and what they are proposing to do with it. Sarah, now you can REALLY be a groupie! :)


OK, my posts only seem to be longer. I apologize. I'm not trying to lecture either of you, just trying to keep lines of communication open. Since the topics of discussion have wandered far from Kim's article, I'm happy to discuss further off-blog with either of you at any point. My email is [email protected]. Maybe I'll see you around the blogosphere.

Benedetta

Jan
Exactly,
and then you have some one come out of the wood work with a title Doctor, or PhD trying to tell you how stupid your are to believe it is the immune system, or the vaccines.

PhillyMom

April is also 1st Holy Communion month. Yesterday, at a small Holy Communion party the autism rate was 3 in 10 boys (all under the age of 12). All 3 boys had the full blown autism diagnosis at age 3-4 and have significant support/intervention. The 12 yr old has improved and is now diagnosed with Aspergers, the 8 yr old is now PDD-NOS, and the youngest still retains the full diagnosis.

Everyone at the party was commenting about how they never had met anyone with autism, and now here are 3 young boys in one room!

Jan Randall

I've been reading all the comments and I'll add my two cents...
The autism diagnosis is a bomb because most of what you thought you knew and understood about being a Mom or a dad is now insufficient.
My dreams for my beautiful and wonderful son were destroyed, blown up by a disability that destroys his understanding of the world, his ability to be safe, his ability to communicate, and his gastro-intestinal system.
Is he the bomb? Hell NO! He was devastated and completely changed by the bomb of Autism.
My sweet young man, who I adore and love with ever fiber of my being has been screwed out of any semblance of a normal life due to Autism.
As I tell EVERYONE will listen, Autism hurt my sweet Andrew. For me it isn't the Autism but rather the bullshit hoops I have to jump through, the bureaucracy I have to deal with and the idiots I have to endure, because of Autism who make my life hell; but never ever my son.

Cassandra

"We have a fundamental disagreement on the benefit of vaccines to the public. We are both steadfast in that belief and both feel that we can back up our view with facts. Much like the evolution/creationism argument, it can be hard to find any common ground. So, the real question is can we have civil discourse about the topic?"

If by fundamental disagreement you mean that I believe that vaccines should be held to the highest safety standards and we should constantly evaluate whether they indeed deliver their purported benefits, as opposed to saying that they save lives therefore we should not question their safety, then yes I fundamentally disagree with you. It is funny that you mentioned creationism bnecause your position is more akin to a blind faith approach.
When you have facts to respond to my questions then yes, we can have a discussion about this but your creationist statement clearly highlights your agenda.

Sarah

Hi Qwerty,

Thanks for the thoughtful response. I have read Capecchi study on knockout mice and, yes, gene science does get highly technical so sometimes I do rely on explanations. I also thought Capecchi interview was fascinating and very informative so yes, sometimes I'll rely on news stories or interviews.

As far as research, autism parents are used to digging deep. Many of us follow the science like groupies. For us, it's like we're searching for the holy grail every day. We just want to understand this. When autism effects your child you just become driven. We will go to those dark corners of scientific research and shine a light.

Scientists are my new heros. Trust me, autism research on behalf of our kids is, in most cases, highly valued by parents and we recognize that the real break through research does not get enough attention (or funding) it deserves while less valuble science gets tons of media attention. That frustrates us to no end.

I am a big admirer of Dr. Capecchi and his team. I am very interested in microgial research and autism. I'm also tracking the work of Dr. Carlos Pardo from Johns Hopkins who has done similar autism research on neuroimmunity in the brain. He spoke here:

http://www.uctv.tv/search-details.aspx?showID=14661


I look forward to more understanding of gene-behavioral-environmental interactions and hopefully one day treatments.

Also, since I now other parents will be interested, here are some more studies on microglia and autism.

Brain inflammation link to autism

http://news.bbc.co.uk/2/hi/4004075.stm


Molecular mechanisms: Autism brains show 'angry' microglia

http://sfari.org/news-and-opinion/in-brief/2010/molecular-mechanism...


Scientists capture microglia's role in brain connectivity

http://sfari.org/news-and-opinion/news/2010/scientists-capture-micr...


http://www.sciencedaily.com/releases/2011/07/110721142410.htm
Tags:


Gardening in the Brain: Cells Called Microglia Prune the Connections Between Neurons, Shaping How the Brain Is Wired--Science Daily

http://www.sciencedaily.com/releases/2011/07/110721142410.htm

Fragile X Syndrome Can Be Reversed in Adult Mouse Brain

http://www.sciencedaily.com/releases/2012/04/120411132053.htm

and I found this for anyone who wants a quick overview of Capecchi's work.

Mario's Transgenic model:

http://learn.genetics.utah.edu/content/tech/transgenic/

Kim for Dr. QWERTY

For Dr. Q: Free streaming seminar by Dr. Martha Herbert, neuro from Harvard: http://www.ariconference.com/online_cme.html And she has a new book out that I think will appeal to your science expertise. KS

Kim for Dr. QWERTY

Conference info for QWERTY: Hi, Dr. Q, here's the link to ARI - check out the science track for professionals at this weeks ARI conference at Liberty Aorport. Thanks. KIM

http://www.ariconference.com/nynj/hotel.html

Lord Moloch

querty

This paper by Vashist and Puliyel 'Polio programme: let us declare victory and move on" may be of interest:

http://jacob.puliyel.com/download.php?id=251

47,500 cases of NPAFP (polio by another name) after OPV programme.

No interest? No concern? I doubt whether reporting things like this make Puliyel's life more comfortable.

Lord Moloch

querty

Naturally, you decided not to respond directly my comments on third world vaccines programmes. If parents see their child die or become sick after after a set of shots it may just be a statistic for you, but at best they know they are playing roulette.

As to Gates, he was a talented software designer, but his real genius was coercing everyone into taking his products, and this has a certain resemblance to what's going on here.

Donna K

I couldn't sleep thinking about Kim's post earlier today and Qwerty's initial comment criticizing her. I felt she used an appropriate metaphor for what has happened to many of our children. The inflammation burning inside their bodies just isn't as obvious as the stark burns and injuries on the small child's body in the accompanying photo. My child bears the scars and pain of being burned by a fire still raging within her body. The flames ignited within my child's body were lit using the "starter fluid" contained in the many vaccines that were repeatedly injected.

I am beyond frustrated that so many people in the medical and research fields, who supposedly are intelligent and objective, find it so hard to consider that repeatedly and increasingly overstimulating (upregulating by design) an immature human immune system in such an unnatural way can have catastrophic consequences. How can those involved in creating these "fire starters" not anticipate the strong possibility of this outcome. Many of our children are suffering horribly with global physical inflammation, concentrated especially in the brain and gut, the result of having their immune systems shifted into overdrive.

Moms know their children. My child, like many others, was not born "autistic." My child had more than a year of normal cognitive and speech development until crashing during the second year of life. I witnessed my child's response to the attack on her health from an over-aggressive immunization program that resulted in an inflammatory encephalopathy. A convenient diagnosis of autism by the ped, my child's devastating regression of skills (compounded by paralysis, intractable seizure disorder, colitis, immune suppression, self-injurious behaviors, etc) was insanely abnormal and should have set off some alarms.

If the collection of behaviors that define autism had always existed, there would have been a term already created within the language(s) for it by mothers. There is no historical tradition of mothers worrying about "losing" their child to autism much less even being aware of it, until most recently. Mothers and fathers are scared today, as they should be.

Given what we have gone through, I am not exaggerating by saying that I honestly feel terrorized when a medical practitioner pressures me to continue to vaccinate my children. The thought that any doctor at any time can and will force a vaccine on my children without my permission or knowledge is terrorizing to me. My experience has been that my child can have a tortuous and devastating reaction to a vaccine and the medical practitioner(s) will try to deny the damage, and then compound it by denying medical care to address the pain and injury. My child suffered a hit and run with conventional medicine's immunization program and she's got lots of company.

Moms want to protect their children. We have an instinctual ability to sense danger when it threatens our children. We are on our guard now because we have learned the hard way that there is a very real danger that is lurking behind a veil of knowledge and respectability- but it is fashioned out of propaganda masquerading as science.

Like the fireman who braved a burning building to rescue an injured child, there are real heroes in this inferno who have risked their livelihoods and reputations to rescue our children: doctors who offer appropriate treatments for our children's very real medical issues, doctors who allow parents to exercise their rights to decide the risk/benefit of each vaccine for their children, scientists who conduct honest research into how our children were injured and into real effective treatments for those injuries, journalists who expose the truths about what has been transpiring behind closed doors, lawyers who seek justice for our children, and the parents who try to caution others of this fire hazard so that other children will not get burned.

Tim Kasemodel


Qwerty,

I am pleased to see such a well written and reasoned response from someone on the other side of the debate. More often than not we get called names and hear one liners and canned skeptic responses. I feel I actually learned something versus feeling, as a parent, attacked.

You asked Sarah if she (regarding Capecchi’s research) “only read the title, did you find a press release describing the results in lay terms”. I can tell you that the parents who frequent THIS website READ studies. I also want to share with you this story.

When we were trying to pass legislation in Minnesota for a “Preference for Mercury Free Vaccines” we had a meeting in the Governor’s office that included the then MN Commissioner of Health, Dr. Sanne Magnun. During that meeting autism was not brought up until she mentioned it, assuming that because most (not all) of us advocates had children with autism, it was the only reason we wanted the poison out of vaccines. She stated, just like you do, that the available public health data suggest that vaccines, especially ones that contain mercury, do not cause autism.

When we asked her which studies she was referring to she sputtered “You know, those 12 studies”. We then asked her to pick one and explain where the study she might pick actually says that vaccines DO NOT cause autism. She could not name one – not a one. We parents provide her with the exact titles of three or four right off the top of our head and then she recognized them, but still could not reference any real information from any. When questioned further, she confessed that she had only really read the summary and conclusions of a few of the “12 studies”.

We went on to explain in great detail what the studies actually show if you read them and said that it was pretty pathetic that parents knew more about them than the Commissioner of Health, given that she was opposing our legislation based primarily on those 12 studies. Fact is most doctors and pediatricians do the same thing that Dr. Sanne Magnun did – use their title of doctor to bully unsuspecting parents and misrepresent what they actually know about the research they so often quote.

Parents who frequent this website, including myself DO “look at the OVERALL direction and findings of a scientific field, rather than focusing on a single report.” For proof of this just do a search of this website for the incredible Teresa Conrick.
You point out that “the available public health data suggest that vaccines do not cause autism“. Again, like I asked the MN Commissioner of Health, can you tell me which study actually makes that exact statement? I know studies that say they could not rule out mercury causing autism in small subsets of kids, and some that make some ridiculous conclusions (when you actually read and analyze the whole study) regarding the MMR vaccine, but to generalize those into all vaccines, and all COMBINATIONS of vaccines is simply lying.
You finish with the statement “Let's move on from the vaccines-cause-autism debate and move forward with understand the genes involved in these behavioral diseases.” Can you tell me exactly how continuing the debate threatens genetic studies in any way? I think there are some very important unanswered question regarding vaccine safety such as the impact of vaccine combinations, what happens if you use true placebos instead of vaccine ingredients in vaccine trials, and the much awaited true vaccinated / unvaccinated child study.

I would think there would be incredible avenues for genetic research if we started from the standpoint that both prenatal and neonatal environmental insult has incredible affect on infant health.
As for Kim’s connection between Oklahoma City and those who are not being completely honest about the epidemic of autism, I have to agree wholeheartedly. If Emmett misinterpreted the message, then he obviously does not know the autism that I know, that MY SON knows.

Please care about their bodies!

Scientists are observers who manipulate variables to find relations. It is funny how many supposed scientists refuse to manipulate the variables when it comes to vaccines. Why won't they do the study of vax vs unvaxed. Yaeh.... it's becuase they aren't really scientists.

Benedetta

Sarah I am sure just listen to the news report. I am sure she is just like me only understood a word or two. I am also sure she barely read the title.

And what she and I plan on doing is getting those bone marrow transplants really often -- right after each vaccination.


Everything I learned that was important was after I graduated from college-- not no post hole digging degree but two little ol'e masters, and then life taught me the real stuff.

qwerty

Cassandra -- I'm sure that I must sound pompous and ignorant to you (and you to me). We have a fundamental disagreement on the benefit of vaccines to the public. We are both steadfast in that belief and both feel that we can back up our view with facts. Much like the evolution/creationism argument, it can be hard to find any common ground. So, the real question is can we have civil discourse about the topic?

As for the Bill and Melinda Gates Foundation, I am always floored by how many negative comments I seen on blogs like AOA. In my view they are an amazing foundation and something rarely seen in our culture -- a VERY rich man who has decided to throw his wealth at the problems that plague the human race. Yes, he funds vaccines (and heavily at that), but he also funds education, women's rights, solutions to improve hunger and water supplies. Surely you don't disagree with that? Don't throw the vaccinated baby out with the clean bathwater.

Doctorl

“Let's move on from the vaccines-cause-autism debate and move forward with understand[ing] the genes involved in these behavioral diseases.”

There we have it from Mr. Unidentified Ph.D. Scientist. Let’s move away from the “vaccine-causes-autism debate” and focus our efforts in a plausible direction directed away from the cause of this genetic damage. Yes, Qwerty sounds authentic, but he’s not.

Kim’s analogy is very similar to Craig Roberts’ analysis of the OKC bombing vs the JFK assassination, and now vs autism epidemic: Direct them away from the truth.

qwerty

Hi Sara,

A very thoughtful (and thought-provoking!) comment. Please excuse the long winded response, but I wanted to take the time to properly respond to what you wrote because I think you raise some important points.

Yes, I am familiar with Capecchi's work. He shared the Nobel for finding a way to engineer mice that have one gene - and only one gene - "knocked out". Since his discovery this has become a routine tool used in many labs throughout the country. People who study the immune response have a list of genes that they think might be important, so they knock them out and study the effects in mice. Same thing for people studying Alzheimer's, osteoporosis, etc, etc.

Microglia are very cool cells and they are, indeed, the main cell type responsible for controlling immune responses in the brain. I know of the paper you're referring to about the Rett syndrome and BM transplant, but this isn't Capecchi's work, it's research carried out at the Univ. of Virginia by a guy named Jonathan Kipnis. It was a very cool result and potentially very important (which is why it was published in Nature, one of the most prestigious journals out there). Capecchi has been working on something similar, where he showed that healthy microglial cells could rescue mice from a repetitive hair pulling behavior (published in the equally prestigious journal, Cell). However, keep in mind that BM transplants are not a walk in the park. The dose of irradiation that has to be given to kill all the child's own BM before transferring the new BM is high and causes many serious issues, including death in some cases. It is usually a last resort given only to save a life.

I'm curious, how did you find that paper and what did you take away from it (i.e. did you only read the title, did you find a press release describing the results in lay terms, etc?)?. I ask this because one thing that desperately frustrates me is that all the work we do is so difficult to communicate to the lay public. I try very hard, but I have many colleagues who do not. In the end, I feel the rift between science and society only grows, leaving only the dark alleys of the internet to educate the public.

This all brings me to my last point (OK, more than one), and I hope I haven't bored you so much that you've stopped reading.
1. If you look hard enough, you will certainly find scientific literature supporting any view you might hold, no matter how far askew that view might be. Science is driven by people, and as such is subject to error, bias and ego. The peer review process is supposed to lessen these factors, but it's not perfect either. I would just encourage people to look at the OVERALL direction and findings of a scientific field, rather than focusing on a single report.

2. I've never said that there's no connection between the immune response and the brain because I know that statement would be untrue. The immune response is incredibly complex and capable of some astonishing feats, but the available public health data suggest that vaccines do not cause autism. Unless, of course, you believe that this is all a cover-up perpetuated by some mix of government, pharma and money-hungry scientists.

3. I wish that there was more research money available to do something that would be useful to your son (and mine): like developing an animal model for autism that would allow us to use knock-outs to start finding genes and treatments that influence autism, or like moving forward with stem cell and gene therapy that has been stalled because these approaches are political hot potatoes. Interestingly, the two mouse studies mentioned above both involve a single gene mutation (Hoxa8 mutation results in hair-pulling, and MECP2 mutation with Rett syndrome). Let's move on from the vaccines-cause-autism debate and move forward with understand the genes involved in these behavioral diseases.

4. Lastly, and most importantly, I wish you all the luck, love and happiness with your son.

Cassandra

@qwerty: wow, the combination of pompous arrogance and know nothing ignorance is painful. From one PhD to another, your education was wasted if you don't recognize that vaccines CAN and DO CAUSE autism.

I sat in the room with CDC officials who had the nerve to blame their incompetence on people who have been asking for safer vaccines, while blatantly denying ANY vaccine injury.

No amount of vaccine can save African children from dying without clean water and nutritious food, and they will buckle under the cost of caring for vaccine injuries if we fully export our vaccine schedule to them. Oh, and if it is up to the WHO, it will be with the full load of mercury!

Ask Indians what they got in exchange for the $2 billion they payed for polio eradication? They got over 40,000 cases of vaccine induced paralysis a year that is twice as deadly as the one induced by wild-type polio for a cost 100 times that of the "charitable" donations they got. They stated before the program started that it was not a high priority for them but they were pushed into anyway. But hey, Bill Gates and others can brag about India being polio "free".

Why is it that other countries can screen for Hep B and only give it to at risk children, instead of injecting every newborn at birth? Or why is it that the FDA approved Gardasil when it was clear that Merck covered up the side effects by using the adjuvant as placebo? But of course, all these agencies are filled with angels who are working for the greater good!

I am sorry about your kid, for his or her sake, open your eyes!

Autism is NOT the bomb- Vaccine damage IS the Bomb

Dear Emmett,

Autism is NOT the bomb nor are you "a bomb." Our children's bodies and minds were attacked not unlike those innocent children playing in the daycare when a bomb forever changed their lives - ending it for many.

The blame is not on the condition but on those who forever had a hand in the tragic transformation from healthy child to immune illness, seizures, gastrointestinal disease, asthma, allergies, OCD, neuroinflammation, acute anxiety, sensory overload, and death too early due to drownings, seizures, hit and runs, abuse, and down the road-- cancer due to viral and heavy metal persistence. None of that sounds good and any parent who understands the devastation of the "bombings" that these children encounter that makes them so ill, will speak out to defend their precious children.

They are all precious children and to accept their fate due to vaccine damage and to celebrate April as a month of celebration is a tragedy.

Benedetta

Emmett Do you have any health issues at all?

Stagmom

Emmet autism is what my girls have not who they are. I respected your feelings and extended an olive branch. You commented here and I chose to respond. And I will spare you further interaction by wishing you well and bidding you good night.

For Qwerty, I suggest you attend the science track of an autism research institute conference for professionals like you. There is one next week in Newark if that is convenient for you. We need open minded scientists willing to focus on autism causation. Thank you.

Kim

Emmett

Kim, I am autistic- thanks to a hard road of mistakes and learning, higher functioning now than I was once, but autistic nonetheless. If I cause people discomfort and despair (which I do), I do it as an autistic person. If I cause people joy and happiness (which I do), I do it as an autistic person. I do not cease being an autistic person when I am making people happy, and I reject any formulation of myself, that seeks to identify my negative attributes as the autistic me or as my autism, and my positives as a hypothetical me dispossessed of autism. 'My autism' doesn't make people sad, because my autism is not a person of its own or an object that I own- it is a condition in which I, a person, exist. I make people sad, and I do it as an autistic person. I make people happy as an autistic person as well. You can't hate our autism in exclusion to us- autism only exists through us. If autism is a bomb, then we, autistic people, are bombs.

I understand, we must try to understand the stress placed on parents of autism, especially those of us who face greater developmental challenges or who deal with those challenges with more difficulty. Parents of autistic people are stressed. How can we forget it, indeed, when practically every news story reminds us what burdens we are, how we tear families apart, how there is no worse sentence for a parents than to have an autistic child? Burden, I can understand. I can deal with being a burden- I've been called one enough, I'm used to it. You have to get used to it. When your mother or father stands up in a room, with you sitting right next to them, and says that every day with you is a little tragedy, it hurts. When your brother or your sister accuses you of being the reason for the divorce, it hurts. When people respond to the killing of someone like you with concern for what a burden the victim must have been, it hurts. You have to get used to it, and so you do. Being called a burden, I can deal with.

But a bomb? Is my existence as an autistic person so terrible, so destructive to those around me, that I am like a bomb, blasting away lives and killing or maiming everything I touch? Is that how you see us? As human explosives created by some conspiracy in the halls of power, sent to destroy you? Disruptive forces that by our very nature tear apart families and homes and leave desolation and irreparable damage in our wake? With mindsets and rhetoric like that, it's small wonder our 'victims' (our families) keep destroying us- as Katie McCarron, George Hodgins, Jeremy LaBrie, and Daniel Corby were destroyed. Whether the destruction is fast and physical or slow and emotional, who wouldn't want to destroy a bomb?

Spare me further explanations and rationalizations of what you meant. I know them well enough. I'll go now, so as not to victimize you anymore with my destructive presence.

Doctorl

Qwerty,

My guess is you’re fairly traditional in your choice of uninformed views, unless, of course, you’re simply another disinformation expert trying to portray AoA writers as a group of radical conspiracy theorists.

Although I may not agree entirely with Kim’s analogy, there are physicians and directors at the highest levels that do suppress and redirect legitimate investigative research into the true causes of and alternative treatments for autism. The same also implement and enforce medical policies that are advancing the autism epidemic. However, the vast majority of medical physicians with regard to vaccines and autism are just pawns of ignorance.

Kim also appears to be correct with her analogy to OKC in ways she may not realize. Craig Roberts was one of the investigators. In his article “Oswald and Dealey Plaza vs. McVeigh and the OKC Bombing” (NewsWithViews.com, February 17, 2005), he covers the eerie similarities, which is similar to the methods used to suppress knowledge and evidence of the autism epidemic. I think that is what she was driving at. You may even find it interesting. http://www.newswithviews.com/Craig/roberts5.htm

As for being a “scientist” who studies the human immune system, that’s great, if you are what you claim to be. But Africans in remote villages receiving one rotavirus vaccine is not quite the same as a new born infant getting a Hepatitis B vaccine with 225 mcg of aluminum and genetically engineered yeast then followed with a barrage of vaccines given simultaneously into an undeveloped immune system and BBB within the first year.

Why don’t you drop your card since you’re “just passing through.” I would be interested in reviewing your work.

Sarah

qwerty,

As a scientist are you familiar with the work of Dr. Mario Capecchi? Capecchi is a geneticist who won the Nobel prize for his research. He researches mental illness and immmunity in the brain. His focus is on the microglia and he says "defective microglia output, defective behavior" He says in order to treat mental illness, we should treat the immune system. His team did experiments on OCD behavior in mice and was able to cure the behavior with a bone marrow transplants.

Here's an interview with Dr. Capecchi (click on the full interview)

http://www.ksl.com/?nid=148&sid=10947928

Bone marrow transplants have also been found to reduce Retts syndrome in mice as shown in this recent study.

"Bone-marrow transplant reverses Rett syndrome in mice
Rare autism spectrum disorder is partially caused by faulty immune cells in the brain."


http://www.nature.com/news/bone-marrow-transplant-reverses-rett-syndrome-in-mice-1.10243

How does this link to vaccines? Since vaccines are designed to provoke an immune response, couldn't it be that vaccines could cause the brain's microglia to overreact in a sensitive subset of children? What if the microglia keep producing an inflammatory reponse (cytokines) instead of shutting off. What would that do to a baby's developing brain?

My son does not have Retts but I suspect his microglia are defective which could be causing his autistic behavior. I wonder if bone marrow transplants may be a course of treatment for autism some day.

Lord Moloch

What the children of the developing world need above all is decent living conditions, sanitation, clean water, nutrition. If you bombard compromised immune systems with vaccines it's just an even bigger game of roulette than over here: even if there are arguably net gains. But it is at best a complex matter as Aaby's research has shown. The gung-ho approach of Gates and co, shows ultimate disrespect for individual human life. If - for the sake of argument - we have to sacrifice one child to save two, is that an acceptable way to treat people. Equally idiotic is the idea that we could vaccinate the world to health.

But people here have a basic problem. Their children were vaccinated, lost health and regressed. And what happened: the medical profession and the government shrugged and walked away, pretending everyone was mad or dispicable.

qwerty

correction. that was meant to be directed at Heidi and laura, respectively (not Kim and Pat). Sorry for any confusion!

qwerty

@Kim -- I'm open for debate. In fact, I'm a scientist (that's right, get the holy water out), so debate and constantly refining my understanding of issues is what I do for a living. I have a PhD and have spent my professional life conducting research on various aspects of the human immune system and have published numerous peer-reviewed articles. I've traveled to Africa and worked in areas where children suffer significantly from vaccine preventable diseases and die from diseases for which no one has bothered to try to develop vaccines. These are the same areas where children get seriously ill and die from rotavirus infection: infants + infectious diarrhea + remote villages with unclean water = bad situation. So, if you want to debate by all means bring facts with you to the table and leave the rhetoric and internet pseudoscience at home.

@Pat -- It's really great that you take an active role in trying to influence your state and local government. If more people did this, we would certainly be a better country as a result. However, I disagree with your statement about this country's "vaccine philosophy". Any scientist or physician that says all vaccines are 100% safe for all people all the time is either not being entirely honest or simply doesn't know as much about vaccines as he/she should........I just deleted about three paragraphs that I had written about the good and bad of vaccines because I have a feeling you might only take the bad and ignore the good, so I felt I was wasting my breath (or keystrokes).......If I'm wrong let me know. If this is more of a "preach to the choir" blog, I'm happy to leave. Just passing through anyway.

s

qwerty-
Two points:

"comparison of physicians with a known terrorist and murderer"...funny that you cannot feel that as the same level of unconsciousness.

"McVeigh's actions were motivated by anti-government sentiment."
It is familiar. But a little heads up might be the number of people objecting. Our country was designed for freedom of speech. And similar to our founding fathers, the more people object to unfair laws, the less formal governments, like England, listens. Wonder what happens next in this repeating cycle?

Stagmom

Hi, Emmet. A bomb affects everything in its path and autism affects every aspect of a family from Mom and Dad to siblings and those around us. It is an analogy not meant to be taken literally I did not say that you (or my kids) destroyed any family. I am clear in my writing how much joy, faith and love my kids have brought me. I said "joy and happiness" and there is plenty - but not because of autism. Because of the person who HAS autism and how much we love them - as I'm sure your family loves you - even as they work to help you and will likely do so until the end of their lives. As I plan to do for my kids. I wish you well. And I hope you get treatment for your depression. Best, KIM

Emmett

As an autistic person suffering from depression, I really needed to be told that I am a bomb who destroyed my family. Thank you for that, Kim Stagliano.

pat

4/19/1993 Branch Davidian Seige, Waco Texas
4/19/1995 Oklahoma city bombing
4/20/1999 Columbine High School Massacre
4/16/2007 Virginia Tech Massacre

not a good week in american history

Laura Hayes

Well said. Excellent piece, Kim.

For us here in Northern CA, this has been yet another exhausting week. On Tuesday, we spent the afternoon at the Capitol, trying to stop the egregious and unconstitutional Assembly Bill 2109 from passing out of the Assembly Health Committee. This bill would require that an MD, NP, or PA sign-off on a philosophical exemption form, after "counseling" the parent and giving them "accurate" information about vaccines. In other words, our philosophical exemption will become a medical exemption, and we don't have a separate religious exemption here in CA. Furthermore, these MDs, NPs, and PAs will not be required to sign these forms, even after their little counseling session. You can see where this is headed. This bill is being co-sponsored by the CA AAP and the CMA, surprise, surprise. Quite strategically, the CA AAP conveniently held a "lobbying convention" the morning of the hearing, and then had all the white-coat-wearing attendees, many of whom were med students, file up to the mic in the afternoon to say they are in support of this bill, and would "happily" sign these forms for parents. Somehow that doesn't ring true after a recent study showed that 39% of pediatricians are saying no to patients who don't vaccinate. Sadly, the 111 or so parents, chiropractors, nurses, doctors, and others who went to the mic to say that they are vehemently opposed to this bill were basically dismissed. Assembly Members' minds were already made up, along partisan lines. Only 6 min. of testimony were allowed per side on this critical issue. Pathetic. Sad to report that it sailed on through the Assembly Health Committee, and will now go to the Appropriations Committee. It is highly likely that this bill will sail on through like AB 499 did in CA a few months ago, which gives a 12 y-o permission to get the Hep B and HPV vaccines, and any other vaccines that come along that are STD-related, without a parent's knowledge or consent.

More disappointing meetings followed this week, including one about the complexities and difficulties involved in getting your insurance company to pay for ABA services, despite SB 946 being signed into law last Oct. here in CA.

The only things I find to celebrate about autism are the amazing parents, children, families, and organizations who fight so hard to help their own children and other affected children to obtain appropriate services and help. Also worth celebrating are all those who try to educate others about the dangers of vaccines, despite the unfounded and dangerous "vaccine philosophy" which persists in our country which goes like this: all vaccines are safe, for all people, at all times, in all numbers, in various combinations, without exception.

Hang in there, fellow warriors. I have the utmost respect and appreciation for you!

Heidi Roger

Kim,
Like so many others in our arena, I am a hair's breadth away from crying at any moment. That horrifyingly powerful 17 year old photo just triggered the release of the deep seated sadness we all carry. Clearly no amount of debate will change the mind of QWERTY and others like him/her but you are spot on with your comments. Thanks for all you do for our kids! xx

Mary

When Columbine happened on April 20, 1999 my brother in law was a first responder. You may remember the tall swat officer pulling the boy from the window. That was my brother in law. But for all of the notoriety of that moment, my brother in law wanted absolutely no recognition. Children the age of his kids died that day. He wanted no honors for the horror he witnessed.

When Oklahoma City happened my cousin was a nurse on site as a first responder. It is a tragedy no one in Oklahoma forgets. It happened to those they know and love.

What the two tragedies illustrate is that those most affected remember the horror, and never look for the honors. Children were hurt and killed in these incidences. To this day they still mourn. And that is the problem with the term "celebrating" autism. We are still in mourning and always will be.

qwerty

Kim,

The level of rhetoric in this article is pretty shameless, as is the comparison of physicians with a known terrorist and murderer. I suppose you are the heroic fireman carrying the bloodied child from the carnage of big government? Please. Maybe you should have just gone the full 9 yards and drawn an analogy between 9/11 and the autism epidemic. One collapsing tower could symbolize the government, the other Big Pharma -- both dropping their crushing weight on the children of this country. Perhaps you're saving that doozie for a different anniversary, eh? What good does an article like this really do? As the parent of an autistic child who is also "in the trenches" along side you, I can say with confidence you're shooting the wrong direction.

Oh and by the way, McVeigh's actions were motivated by anti-government sentiment. Sound familiar? Maybe you should be comparing yourself -- and others of similar ilk on AOA -- with the likes of McVeigh? So, Kim, take YOUR foot off the pedal and step away from the Ryder truck loaded with lame conspiracy theories.

cmo

Kim, It cannot be said better than you said...

..."There are Tim McVeighs behind this epidemic. They hide in high places. We've elected them. They work in the media. They are physicians. They create laws and medical edicts you must follow. They set policy. They know.

They loaded the truck and haven't taken their foot off the gas pedal yet."

John Stone

Hi Anne,

Why are Autism Speaks celebrating? Maybe because its a bonanza?

http://www.ageofautism.com/2011/05/1-in-38-autism-speaks-new-normal-is-the-biggest-business-bonanza-ever.html

http://www.ageofautism.com/2012/03/the-phoenicians-autism-recovery-denial-drug-profits-and-the-medias-flat-earth-2012.html

John

aroundjoy

nonPareil Institute...
http://www.creektreefilms.com/programminghopevideo.html

First do no harm

Hey Autism Speaks, you want to know what we're celebrating? (Hint: it's not autism, autism awareness or autism anything.)

http://i.telegraph.co.uk/multimedia/archive/02171/PD16886513_DTEM_2171115c.jpg

Autism Speaks, the best thing you could do for autism is fire yourselves, give the money back and go away.

Lisa Look Adams

Very Well Said.
This April has been exhausting. I think it has been hard for me because the 1 in 88 number is from my son's birth year (2000). It hits hard that so many children are being counted so late in the game with so little being done for so many years. I took my 14 year old daughter to the pediatrician for a well child check up this week. The doctor has been smart enough to never mention the word Gardasil to me. He has recently moved into a bigger, better, shiny new set of offices. There is an "awareness" cork board, the size of a single poster, in the reception area. April is "Child Abuse Prevention" month and "Stress Awareness" month. No primary colored puzzle pieces. No blue lights. No "A" word. I wanted to take a picture with my phone and share my disappointment with Facebook World but I was too damned tired.

Gayle

The spring is a time of renewal and hope, but for parents of autism, like us, it marks another year that there are no answers, and no cure for our children's autism.

Anne Dachel

Someone please tell me why Autism Speaks is promoting a celebration of autism.

http://www.autismspeaks.org/about-us/press-releases/autism-speaks-celebrates-world-autism-awareness-day-2012-light-it-up-blue
http://www.lightitupblue.org/Markslist/home.do

piece of heaven

Maybe because it's spring, that I am crying. Spring used to be a time of joy for me, flowers and beauty everywhere. But it's the time of year our son got his one year shots, and then the following year got his autism diagnosis. Years later, I still can't shake the sadness I still feel at this time of year.

Or maybe I'm crying because your words speak for me. Yes, I'd like to sit down and rest too. Probably not in this lifetime.

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