SEEKING THE TRUTH ABOUT THE NEVER-VACCINATED
By Sandy Gottstein
Editor's Note: Sandy Gottstein of Vaccinations News is a pioneer in the struggle to get public health officials to study autism in never-vaccinated children. At our invitation, she describes her long and courageous effort to bring this common-sense idea to life. Sandy, who does not have an affected child, deserves a vote of thanks from the autism community for her perseverance and clarity on this fundamental issue.
A tree fell in a forest, but no one was there to hear it. Did it really happen?
Who doesn't know the story of the proverbial, fallen tree? Who really cares, though? Isn't it just a fun, arguable, almost silly riddle?
I care, and here's why. We're living the teaser in the guise of never-studied, never-vaccinated children. For if never-vaccinated children rarely, if ever, get autism, allergies, asthma, cancer, SIDS, chronic and autoimmune disease, etc. but they are not studied, in essence, there is no one to hear about it.
The "experts" would have us believe that the things we don't know about don't exist. They would have us believe that the alleged absence of evidence is evidence of absence.
Of course, this is nonsense. Ignorance may indeed feel like bliss, but in the real, material world, knowing has nothing to do with being. But will we ever know the truth?
If the "experts" have anything to say about it, heck, no. If people like me have anything to say about it, hell, yes.
The fact that never-vaccinated children have not been studied has long been my focus and concern.
I've been embroiled in the vaccine issue ever since 1982, when my first child was born. By the time my second was 6 months old in early 1987, I was pretty much done with vaccinations. (Although I had serious misgivings, they did each later get a booster tetanus shot.)
No more vaccines, even though neither of my children had any known vaccine damage. No more vaccines, even though the number was almost nothing compared to what children are being injected with today.
What drove that decision? Three main things: a) numerous studies indicating there have been serious problems associated with and likely caused by vaccination; b) the fact that after reading hundreds of studies, not one of them used the only proper comparison group, never-vaccinated children, as controls, and c) the fact that virtually everything we "know" about vaccine safety has been bought and paid for by the vaccine manufacturers.
I also educated myself about the diseases and their seriousness in developed nations like ours, as well as doing everything I knew to improve my children's immune status. That included nursing my sons until they were at least 4 years old.
I first wrote about the "controls" problem in the late 80s during my extended effort to get a philosophical exemption bill passed in Alaska. Surely common sense would prevail, I foolishly thought, given the state of the evidence. But I seriously underestimated the fear factor and over-reliance (in my opinion) on so-called expert opinion.
When it became apparent that nothing was going to happen vis à vis exemptions, and some legislative interest was voiced for it, I decided to take a stab at the information part of informed choice. The main mechanism was to require vaccination records for all deaths of children 7 and under. (Few children older than that were being vaccinated at that time.) Drs. Archie Kalokerinos and Arthur Zahalsky flew to Alaska to help me meet with some of the movers and shakers in the state. Most seemed interested, but in the end it failed because "Public Health" aggressively fought it.
Public Health fought getting information and won. Sounds painfully familiar, eh?
My next formal attempt at getting attention focused on the never-vaccinated issue was in 1993, when I testified to the Institute of Medicine:
"In the 1991 IOM review, the Committee quite fairly pointed out that it had been handicapped by the lack of adequate studies, including the poor design of many. The Committee also properly concluded that the absence of appropriate studies meant that there was insufficient evidence to indicate whether or not there was a causal relationship between many of the adverse reactions being studied and vaccination. Imponderably, however, similarly flawed information was cited as evidence AGAINST causality in their report in a number of instances.
The Committee's conclusions concerning SIDS and DPT vaccine are a case in point. Although they admitted in their review, and I quote, 'Prior to the 1960's, little was known about the epidemiology of sudden infant death syndrome (SIDS)', they concluded, and again I quote, 'Studies showing a temporal relation between these events are consistent with the expected occurrence of SIDS over the age range in which DPT immunization typically occurs'. Without information on the background rate of SIDS in historically, socioeconomically, and otherwise comparable never vaccinated groups, data on the expected frequency of SIDS merely reflects its incidence among vaccinated populations, rather than absent vaccinations, and cannot be considered accurate or meaningful. Given that such background information was not presented by the Committee, conclusions about the absence of a relationship between SIDS and vaccination were not justified.
Nor were any studies cited - in fact, to my knowledge none exist - in which the only proper control group, never vaccinated children, was used. If, as is the case in most studies, 'less recently', but nonetheless vaccinated, children were used as controls, and an adverse event can be either a delayed or long-term consequence of vaccination, one would EXPECT to find no differences between the study groups, even if vaccination HAD caused an adverse event. Conclusions about causality drawn from any study with such serious limitations are not justified.
The fact is, all controls are not equal. More importantly, many groups are improperly designated as controls. The 1991 IOM statement that a nontreatment group, i.e., control, might be one using an established alternate vaccine, is an example of an improper definition of a control. In no way can any form of vaccination, whether 'established' or less recently administered, be considered lack of intervention. The extent to which various established vaccines and times since administration of vaccine are similar to non-vaccination should be studied, not assumed. Only a placebo, which in the case of vaccination studies equals the absence of vaccination, is appropriate.
As to the notion that it is unethical to withhold vaccination due to 'widespread acceptance' of vaccination, I would submit that to the contrary, if anything, it is unethical to administer vaccinations of unknown safety and efficacy. It is unsound to argue we can't withhold vaccines because of 'widespread acceptance', as the 1991 IOM Committee did, when the reason there is such widespread acceptance of vaccinations is that we have been told the vaccines are safe and effective. Their argument is particularly ironic given their finding that serious consequences can result from the two vaccines, and lament about the absence of adequate information. To the contrary, the conclusion that must be drawn from their review is that randomized, long-term, placebo-controlled, prospective clinical trials are urgently needed, in spite of ethical concerns about ADMINISTERING vaccines of unknown safety. Indeed, no reassuring claims about the infrequency of any linked adverse event should be made until and unless the false premises underlying study designs and the many study design flaws, including the lack of reasonable and time appropriate controls, and reporting system inadequacies, are corrected."
We all know where that went.
After taking a long break from the issue in complete discouragement, the autism crisis reared its ugly head. I had always feared that little would happen until there was a lot of obvious, likely vaccine damage. Those fears, it appeared, were being realized – both the widespread damage and resultant growing interest in the topic.
The Internet was also gaining in use and prominence and it occurred to me that we now had a way to compete with the extensive and expensive propaganda of the multinational drug companies. (Judging by the recent JAMA article on the subject, I may have been on to something!) To that end, my news and information website, Vaccination News (now a non-profit) was launched, in the hopes of providing a means for the public to educate itself and become politically motivated to support better information and the right to choose. After getting a welcome nudge from my friend Nicholas Regush, I also began writing my column Scandals, where the absence of proper controls in vaccination research was a frequent topic of discussion. (Another column, "Out of Control", I never really got off the ground; but it obviously dealt with the issue as well.)
I also had a rally and later gave a slightly revised version of that speech, in which the importance of using never-vaccinated subjects as controls featured prominently. (The newspaper didn't even cover the cold April afternoon rally at which there were around 50 attendants, and at which a mother of a government compensated vaccine-damaged child was one of the speakers.)
But while the political clout of angry parents was growing, little was happening on the never-vaccinated research front.
Then what seemed like a miracle occurred. I was in Washington for a conference unrelated to vaccination and was lucky enough to be free on a day Congressman Burton was holding hearings on autism research funding. So I sat myself in the front row, listening with rapt attention to the unhappy truth about the lack of agency interest in meaningfully studying the issue. Congressman Shays had taken over the hearing, when he suddenly announced that for the first time questions would be taken from the audience. Being in the front row, my wildly waving hand was noticed and I was included in the list of five.
Here is what transpired, and my later response to their comments:
Ms. Mintz. Hi. My name is Sandy Mintz. I am from Anchorage, AK. I am lucky enough not to have a child who has been injured by a vaccine.
My question is, is NIH ever planning on doing a study using the only proper control group, that is, never vaccinated children?
Dr. Foote. I am not aware of--but note carefully what I said, that I am not aware of--a proposed study to use a suitably constructed group of never vaccinated children. Now CDC would be more likely perhaps to be aware of such an opportunity.
Dr. Boyle. The study that I mentioned earlier that we are doing in collaboration with Denmark compares children who received the MMR vaccine versus children who did not receive MMR.
Ms. Mintz. But I am saying never vaccinated with any vaccine. That assumes that other vaccines don't cause autism, which is what needs to be studied, not assumed.
Mr. Shays. Let me just say that if you would turn off your mic, I am happy to have you do the followup, if you would respond to it.
Ms. Mintz. I'm sorry.
Mr. Shays. No, you don't need to apologize. And we will go to the next. Do you have any other comment based on that? The point that is being made, any vaccination. Could we just suggest that you take this under advisement?
Ms. Wharton. The difficulty with doing such a study in the United States, of course, is that a very small portion of children have never received any vaccines, and these children probably differ in other ways from vaccinated children. So performing such a study would, in fact, be quite difficult.
The Denmark study was a study that, in fact, could not have been done in the United States, although, of course, these children did potentially receive some other vaccines, but simply hadn't received MMR.
Mr. Shays. I will invite anyone who is here to speak to staff or me afterwards if they want to augment a comment."
While I wasn't able to 'augment my comment' right after the meeting, here's the gist of what I later e-mailed to Beth Clay, the professional committee staff member who was present at the hearing:
1) There are more than enough never vaccinated children in the states which allow philosophical exemptions to conduct a proper study.
2) If children who have not been vaccinated are different in ways that prevent them from getting autism, wouldn't we want to know that?
Well, wouldn't we?"
Nothing I did or said seemed to make a difference, though. Then another miracle occurred in the form of Dan Olmsted. His examination of the Amish and a clinic in Chicago brought attention to the issue like never before, even resulting in Representative Carolyn Maloney introducing a bill to do just such a study.
As we are sadly learning, however, so far that effort has also led to nothing of substance.
And nothing it will remain, unless more and more of us get involved.
It is hard not to feel completely disheartened, especially being so far away from everyone deeply involved in the issue. My health has definitely suffered because of it. Sometimes, many times, I have wanted to forget the whole thing.
But then I think of the precious children already harmed by vaccines, and my fear that nothing will happen until there are more of them. I think of those we may prevent from being harmed in the future. And I think of the families struggling in ways I never will have to.
I think of all this and more. And the only conclusion I can draw is that there is no turning (my) back.
So continue to face it I will. I can't help but hope, though, that when the never-vaccinated tree falls it is heard far and wide.
Just wanted to add our story. My oldest had a dx of PDD-NOS, but later lost that dx due to dramatic improvement (no chelation, no GFCF diet, but some supplements, dietary interventions with floortime and other therapies). We did not vaccinate him after 2 yrs old. Later I had another son and did not vaccinate my next one for fear of autism, but he also has the same dx and is more severe than his brother, who was vaccinated. They were both breastfed for over 2 years.
Whatever the answer is to the autism question, it will not be simple. People want to point to one thing or another, but I have a feeling that it will not be that easy.
Posted by: Lori Hernandez | August 19, 2011 at 09:16 PM
It looks like it has been awhile since anyone has posted here, but i have a question and a comment.
The question is whether anyone has heard about 2nd or 3rd generation non-vaccinated children being diagnosed with ASD's?
I know that non-vaccinated children have been diagnosed, but i'm curious if there could be any influence of toxins passed on by mother in breast milk.
There are so many contaminants in our environment that finding the cause or link to autism may prove extremely difficult for a long time.
I am currently a masters student in nursing and might consider doing some research in this respect. I would need to network extensively and be in touch with lots of support.
Posted by: Jonah | May 04, 2011 at 02:18 PM
i have 2 never vaccinated children.
The oldest was born with the cord around his neck, had to be resuscitated,had jaundice, and spent many early months with ear infections.(Found out later that some of the antibiotics and pain killers used contained mercury).He had severe food allergies from birth to about age 5, an elimination diet fixed that.He has a lot of family history of auto immune disorders, including thyroid disorder.I think his chance of autism was 1 in 12.And I ate a lot of fish during my pregnancy due to bad medical advice( this was before the mercury content in fish was so commonly known)
He also woke up sleep walking during the night til about 7.
One of his allergies was to eggs, so we believe that due to the severity of his allergy when a young baby ( unknown to the doctors at the time he would have been given egg containing vaccines) it is possible the shot would have killed him.
And I do believe, given his other problems, that he could easily have been tipped over into autism.
He never got vaccinated.
He does NOT have autism.
When young he had some ADHD type symptoms, but was never diagnosed.
He is very sociable ,popular, bright and does well in school.Like the other mother, I would be willing to be included in a non vaccinated study.
Posted by: anonymous | March 02, 2009 at 11:09 AM
My first child was vaccinated and is not autistic. When I got pregnant with my second child four years ago, I decided I would not get him vaccinated because I kept reading articles about autism. My worst fear came true when he was two years old and he was diagnosed with autism. I am in a support group with other mothers who meet once a month and we have ten mothers in our group. Four of the twelve babies with autism were never vacinated. My good friend in the group, vaccinated her first baby and she ended up with autism so my friend didn't vaccinate her next child and she also has autism. She tired again two years later and her son was diagnosed with severe autism this year. Her physician told her new studies show it is most likely due to paternal and maternal age. She is 37 years old.
Posted by: Proud Moma | March 02, 2009 at 08:54 AM
I have a five month old baby and a three year old daughter. My three year old was fully vaccinated up until 2.3 years of age. Since then I have declined the Hep A, Chicken pox and the Flu vaccines for her. As I have traced her medical and developmental history. I have made definite links that she was affected by the vaccines... Inevitably she presents with an inability to calm herself she bangs her head excessively and sings loudly to herself at the same time, she cannot keep still and presents with multiple sensory processing deficits. She started to have chronic ear infections and asthma starting at 11 months or so after flushes of vaccinations and the flu shot which seemed to have tipped her over the edge. I feel terribly guilty, but she is holding her own and I am now trying to do what is best for the her and for the baby now that I know more and have read five books about this topic since he was born... I am breastfeeding him and have some extra milk for my daughter (She was not breastfed). I would like to learn more about partially or totally unvaccinated children and their health/development. Since this information is not readily accessible do you have any suggestions?
Thank you, Gizzelle
Posted by: Gizzelle ROjas Boccia | January 28, 2009 at 09:14 PM
Hi, i am from the philippines and i just have my 3 month old daughter vaccinated with her first shot of dpt vaccine. I like to know if it will be safe not to continue with the other subsequent doses.
Posted by: Luke | January 28, 2009 at 05:40 PM
I have 2 boys who have never even been to see a DR, let alone be vaccinated.(They were born at home) I have tried to find info about non-vaccinated children as well and all I find is the Amish study. My boys have never been sick, not even an earache, and I think the biggest factor in that is breastfeeding on demand. My 1st self-weaned at 13 months (I was preggers w/ my 2nd and my milk changed) and my 2nd is still nursing at 16 months.
I have always thought that if a study WAS ever done on the non-vac'd child then I'd like to get my boys involved.(as long as its observation and not poking and prodding)Can you tell me if there are any studies in the works or how to find out about one? Any courageous masters students willing to tackle the issue? Thanks for your time,
Posted by: Sheila | April 16, 2008 at 11:20 AM
An FYI - I forgot to mention that I was asked to participate in a 1994 IOM workshop titled "Research Strategies for Assessing Adverse Events Associated with Vaccines" (http://www.nap.edu/catalog.php?record_id=9269 ). I was one of two parents invited, the other being a fabulous woman named Kris Severyn. Although not specifically named, I repeatedly brought up the need for never-vaccinated controls (see page 16-17).
Posted by: Sandy Gottstein | April 03, 2008 at 12:41 PM
A BRILLIANT article. I remember reading something some time ago regarding the Hamish (Amish?) community that none of them are ever vaccinated, not even from the time of birth, and that you don't find one of them with autism . . .
Posted by: Christine Wyndham-Thomas | December 21, 2007 at 02:21 AM
Thanks, Carol, for you ongoing support and comments.
As for my email not working, I'm not sure what happened. It may have been something temporary, as I'm having problems off and on with my email. Here are 3 email addresses that I have right now for the site: firstname.lastname@example.org, email@example.com and firstname.lastname@example.org.
All the best, Sandy
Posted by: Sandy Gottstein | December 20, 2007 at 10:01 AM
Sandy, sending e-mails to you and they are not going through. Message says due to abuse. Is there any other e-mail address that I can use?
Posted by: Carol Turner | December 19, 2007 at 11:54 PM
Sandy, Your tireless efforts to educate the public will no doubt be a lesson in history. Why is it that money, ego, and power forge the very actions in those who we depend on to keep us safe? Your article is comforting to those who have followed you in that perhaps someone will be moved to initiate the kind of studies necessary to prove or disprove the dangers of vaccines. I have just begun to read "The Virus and the Vaccine" which discusses the link between SV40 (Simian Monkey virus) and the Poliovirus Vaccine. EVERY parent and parent to be should read this well-researched/documented book and bring it to the attention of those in power who really care about the health of future generations. This highly carcinogenic monkey virus is being found in brain tumors (various brain cancers), Mesotheliomas, Osteocarcomas, Leukemias and Lymphomas. Reading this one book is enough to make the decision to NOT vaccinate one's child. Thank you for all you do, Sandy, and I will keep you in my prayers, as I do all parents of children who have suffered at the hands of those in whom we "trust".
Posted by: Carol Turner | December 19, 2007 at 09:29 PM
Le Anna, You are right to wonder about the effect on your children of the vaccines you received. And also right to wonder if we will ever know. What really gets my blood boiling is all the lost years, when we could have been monitoring these things and now it may be too late, at least for some of it.
I hope you are able to find solutions for your family. All the best, Sandy
Posted by: Sandy Gottstein | December 19, 2007 at 11:55 AM
Thank you for this article. It really blew my socks off because I too have wondered the same things! I have a 13yo son that was vaccinated with all the ones required from 1994-1997. He has severe asthma & allergies. I have 2.5yo TWIN boys that I have NEVER vaccinated and yet they are mildly autistic. I have wondered more about the effects of what I was vaccinated with as a child and how did THAT affect my children? What do I have in my bloodstream that has affected them? And added to my oldest's problems from HIS vaccinations? Will we ever know the FULL effect and cycles of vaccines? I can only hope. Thank you for what you are doing. May your efforts not be in vain and that you will one day find the work you are doing will find the answers you are looking for.
Posted by: Le Anna | December 19, 2007 at 02:17 AM
Oh, Gayle, thank you. You cannot know how much this means to me.
I will be hoping and praying for you and your family.
Posted by: Sandy Gottstein | December 18, 2007 at 12:37 PM
Thank you so much for all the hard work you have put into your efforts to inform the public about what is the most important issue of our time, vaccines and their inherent dangers. I, too, was ignorant about their ingredients, effectiveness and safety prior to almost fully inoculating my two children. For that ignorance, my beautiful children (yes, both of them) will suffer for the rest of their lives. I have hope, because they have language, that they will continue to improve. They have been mainstreamed in Kindergarten, and I am so grateful for that, but their futures are surely uncertain. I am horrified as I see more and more vaccines mandated in my very state, knowing full well what will come from that, and understanding that way too many parents are misinformed, and completely unaware of the dangers. The scale is being further tipped toward autism for all.
That you run such a vital website without even having autistic children of your own is a testament to your humanity. I keep hoping that more parents will get involved to stop this madness. I have responded by writing to my state legislators, so far to no effect. How I wish more parents and people in general would wake up before either they or their children are impacted as well.
Once again, Sandy, thank you so much for all of your hard work. You have helped me and my family greatly, and I don't even know you. A check is in the mail to you today!!! God bless you.
Posted by: Gayle | December 18, 2007 at 09:43 AM
Thanks for pursuing this. I am so thankful that my mother prevented us from being vaccinated (Christan Scince). There are plenty of people who have not been vaccinated, and the defensive rationale by the NIH is ridiculous. I am also curious about Alzhiemer's, etc., in none vaccine populations. This study, like the Generation Rescue survey, should not be that difficult. It seems obvious why 'they' would avoid this study; I'm anxious to see the results.
Posted by: Stephen Pettengill | December 17, 2007 at 02:54 PM
PS I love what Generation Rescue did and think we should all do what we can to support their work.
Posted by: Sandy Gottstein | December 16, 2007 at 09:22 PM
Thank you, Teresa, for your comments. I sadly agree that until and unless something changes drastically, the agencies charged with getting at the truth cannot be trusted. Unfortunately, because vaccines are "mandatory", they have little incentive to change; just as is true of the vaccine manufacturers. In fact, because they are mandatory, they need to defend them, with lies if need be, in my opinion.
Posted by: Sandy Gottstein | December 16, 2007 at 08:53 PM
Excellent essay. Nonetheless, the CDC, AMA, AAP, FDA, IOM, ACIP, or NIH merit no trust for vaccination-related studies. In constrast, Generation Rescue recently used a standard methodology to compare several traits in unvaccinated versus vaccinated children. Traits compared per group included "ADD, ADHD, Asperger's, PDD-NOS, Autism, Asthma, or Juvenile Diabetes". The results are quite striking and can be viewed at: http://www.generationrescue.org/survey.html
Similar studies could be done using various ways of finding non-vaccinated children. Results of Generation Rescue's study ought be submitted for publication in a peer-reviewed journal.
Posted by: Teresa Binstock | December 16, 2007 at 07:59 PM
Kelli, You made me cry. I am so sorry, too. I wish there had been a way early on to get the word out. It wasn't until the Internet that it really became possible. My heart breaks for you and everyone else. Love, Sandy
Posted by: Sandy Gottstein | December 16, 2007 at 03:17 PM
As I read your story, I experienced the gamut of emotions:
Regret – that my son had been born a decade too early (missed out on recovery efforts while he was young) or too late (missed out “dodging the bullet” of the 90’s vaccine schedule);
Remorse – that I wasn’t as diligent as you in researching the vaccines BEFORE I held my son down;
Resignation – over the fact that not much has changed in the 25 years since you first tried to “sound the alarm” regarding the dangers of vaccines; and
Anger – that the madness continues.
Thank you for helping to sound the alarm – I just wish I had heard it earlier.
Posted by: Kelli Ann Davis | December 16, 2007 at 02:55 PM