Unvax Study: We still need your help
Thanks to the generosity of this community, the unvaccinated children study has received more than $30,000.00 in contributions to continue their work.
We still need more help, you can donate right here (scroll down and designate your donation to the “vaccinated unvaccinated study”).
Dr. Suzanne Humphries has assembled a Q&A about the unvaccinated study that may prove helpful, please read on. Thanks again for all the support!
Questions and comments on the ongoing study at Jackson State University: Vaccination Status and Health Outcomes among Homeschool Children (From Dr. Suzanne Humphries)
Q: Mississippi is the chosen state? Yes, I am not for this at all. Mississippi is also one of the first states to fluoridate their water and it is virtually impossible to access non-fluoridated water (bottled water contains fluoride...) in Mississippi.
A: Mississippi is actually not “the chosen state”. MS is one of 4 mostly southern states selected arbitrarily for the pilot study, which has just been completed, and the data are being analyzed. There were four states involved in the pilot study. Those states were Florida, Louisiana, Mississippi and Oregon.
The main (nationwide) study is planned for Year 2 and the overall analysis will be performed in Year 3. This is the study under discussion.
The upcoming study involves a broader reach beyond those four states. Depending on the fluoridation of each state there could be information in the data to actually show a marked detriment to fluoride. No state is entirely fluoride-free, but some towns are and some are mostly on well water—which can also have toxins. Many households filter the water at the intake and at the sink. It may be worthwhile to add a question regarding water filters on the house and the sink and any known fluoride ingestion, dental or otherwise. However, so few households filter the water that this calls for a separate follow-up study IF there are clear differences in outcomes between vaccinated and unvaccinated children.
Q: So if they need Internal Review Board approval, does this mean that there could be other sources of funding? $500,000 is a lot to come up from the grassroots. There needs to be a benefactor or some other creative financing.
A: IRB approval for the study was obtained at Jackson State University, where the study is based, in 2011. Approval was renewed for Year 2 a few months ago. There is no other current funding for the study. The pilot study was funded by Generation Rescue, whose support was financial. They are totally uninvolved in study design and analysis.
Q: It might be a good idea to see why they need $500,000--what is the breakdown of expenses, etc.?
A: The planned nationwide phase of the study will compare the health outcomes of vaccinated and unvaccinated homeschool children ages 6-15 years, based on responses to an online survey by biological mothers of the children. This phase of the study will require considerable resources in terms of engagement with the homeschool communities in each state, recruitment into the study, and statistical analysis. Mothers will be asked to use their children’s vaccination records and to report physician-diagnosed chronic illnesses. The study was originally budgeted at $850,000 over three years and a detailed budget was prepared, based on that amount. The stated goal of donations totaling $1,000,000 would be to complete the study and then to partially fund a follow-up study comparing the health outcomes of vaccinated and unvaccinated children based on physician records.
If you recall, the NFIP and Basil O’Connor galvanized the country in order to get over two million dollars in donations in the form mostly of dimes, to fight polio. Just about NO questions were asked back then of anyone. And look what they did. The big difference here is that nobody is going to get rich from this, and nobody is frightening the public in order to get people to donate. And questions will be answered of the public. Most importantly, the end result could be totally opposite of NFIP’s in terms of vaccine value.
Q: But we all feel that there needs to be a place to go for our questions to be answered -- like maybe a commonly addressed Q&A that people can read prior to donating.
A: Hopefully, my responses to these questions will eliminate the doubts and concerns of most readers.
Q: A flagrant design flaw in that they are basing it on home schoolers. If the results come out showing unvaxed are healthier (which we already know), the provaxers will simply dismiss it saying that home schooled kids aren't intermingling with as many kids and are not exposed to as many diseases as conventionally schooled children; therefore, it is unknown what their health would be like if they were "socialized" like vaxed public schoolers. They did the same thing with the Amish, going so far as to say that maybe the Amish have some sort of gene that protects them from becoming autistic!
A: In this study the entire study population consists of homeschool children. Since all the children are homeschooled – vaccinated, partially vaccinated and unvaccinated – this will “control” for differences in exposure to human sources of infection.
Asthma, autism, allergies, seizures etc. are prevalent within the homeschool population. This population, while not necessarily intermingling with public school kids regularly (many in fact do so mingle), do have a 54% rate of full compliance with vaccines, so they are nothing close to the Amish in that respect. Also they have a 15% rate of being vax free, which you will not find in a uniform public school population.
Q: IMHO, there tends to be a divide between the autism community and those of us in the trenches to protect our right to abstain and increase the numbers of those saying NO to shots.
A: But isn’t this study potentially a real bridge between the two said communities? This study addresses autism questions and general health issues. The answers have the potential to uphold our rights to abstain and say NO.
Thus far there has been all talk and no do, and since no-one else has had the gumption to get moving, how much longer do we have to wait?
Q: There are plenty of LARGE populations of unvaxed kids that could be used. Dr. Eisenstein has a huge patient base of unvaxed kids under the Homefirst practice in the Chicago area. Another advantage of using his database is that it is under the auspices of a medical professional, not random home schooling families that could be considered unreliable. Additionally, there are lots of schools in CA and elsewhere that have largely unvaxed populations within them. They go to school alongside fully vaxed kids, so there would be no way to easily malign the results.
A: Dr Eisenstein has agreed to support this study as well as the planned follow-up study using his anonymized patient records. However, while Dr. Eisenstein’s patient population may show that the unvaccinated are healthier than the vaccinated, the study will still be criticized as somehow being a self-selected population like the Amish. The only study that would satisfy all of the critics would be a prospective randomized one, and hell will freeze first.
Homeschoolers are estimated at 1-2 million in the US. Such children differ in only minor ways from the general run of children in the US; for instance, the families have somewhat higher levels of income and education. This is well documented in the study proposal. It is hoped to use the records of children in Dr. Eisenstein’s clinic for a follow-up study, and Dr. Eisenstein has agreed to this. The records would of course be abstracted and analyzed so as to preserve anonymity and confidentiality. There is considerable evidence that self-reported data are as reliable and valid as data from official records; in fact, official data tend to underreport the relevant information. In the planned study, mothers are asked to provide details of vaccination that require reference to the children’s vaccination records. As for documenting health outcomes, mothers are asked to report “physician-diagnosed” illnesses and conditions as well as such particulars such as whether a child was admitted to a hospital or had been fitted with ear tubes. The requested information will all be factual.
Q: WHOA! Who wrote the "proposal for the study", anyway? I take strong issue with, "Vaccination is one of the greatest discoveries in medicine, yet little is known about its long-term impact." According to the most commonly accepted understanding of the word "greatest", this statement seems highly prejudicial to me. Might it even put off some from donating? It seems more fitting to say, "Vaccination is one of the cornerstones of allopathic medicine, yet little is known about its long-term impact."
A: Many drafts of the current proposal were written. It is a fact that in any grant proposal one is always appealing for funds from organizations and people who have a particular attitude or vested interest in the subject of the research. If you want to get a study funded, you have to make it appealing to the potential funder.
A proposal for a study written to draw funding from a drug company is worded to show that they could get massive profit and advertising benefit from the proposed results, even if you’ve not even proved it. If there is no benefit to them, or it doesn’t fit into society’s perceptions, then an application isn’t even considered.
Q: My objection was the Generation Rescue paypal landing page...without prior explanation of the connection or reason why/how they were going to collect and be a fiduciary for a $1,000,000 University project...not the research itself.
A: GR’s role is only to collect the money and forward it to JSU for the study. Nothing more, nothing less. If you have further questions they should probably be addressed by GR. There is a link on the donation page for contact. [JB’s Note: We are passing 100% of donations on to Jackson State, we are only facilitators.]
Q: Does looking at the health of home-schoolers translate to the majority of the nation's children who are not home-schooled? In theory, home-schoolers have much less exposure to infectious disease than children in public schools, so if vaccines work (and I'm assuming that this study is not looking at vaccine effectiveness, and therefore presumes that vaccines are effective?), then the public school community could theoretically tolerate more ill-effects from vaccines since there's (arguably) a greater protective need/benefit there, i.e., would this study be vulnerable to the "well, vaccines may contribute to some chronic diseases, but getting the infectious diseases would be even worse for kids not looked at in this study" rebuttal?
A: This was addressed above. In brief, the “within-group” design of the study (basing the study exclusively on homeschool children) automatically controls for the factor of differential exposure to infection. Homeschool children are very similar to US children as a whole. The study also asks questions about acute infectious illnesses in the children as well as chronic illness and other indicators of health and disease. This means that the effectiveness of vaccines against vaccine-preventable illnesses can also be determined.
In reality, many homeschooled children have a far greater variety of exposure to a wider range of age groups than children in school through activities such as choir, music, orchestra, drama, church, Sunday school, athletics, gymnastics, ballet, crafts – and some older children do elective units at university, well before the usual age. Many homeschooling groups have weekly educational outings to science laboratories, factories, museums, parks, and a lot more study situations like stream cross sections, lake studies, animal studies, beach studies, bird watching, community gardening, forest walking are done by home schooling. Those families usually make a far greater use of community resources than children who are 8 – 4 in the four walls of a classroom. (which if pediatricians realized would possibly become a source of great mental panic for them! – Do we want to continue to let pediatricians think that homeschooling is essentially self quarantine, when it’s anything but?)
Q: Would the study rely on the reporting of parents? Isn't that an inherently unreliable source of data for strict scientific calculation purposes? Won't many parents report in a manner supportive of the outcome they want? Are we relying on parents' memories and/or the availability of medical records? Would the final results be at most and best only general indicators that could be criticized and dismissed for any or all of these reasons?
A: This question was addressed. Mothers know their children best! However the study is not based on recall. Mothers are asked to use their children’s vaccination records to answer the detailed questions about vaccination history; they are also being asked to report “physician-diagnosed” illnesses. These procedures will greatly reduce subjectivity or bias. Mothers are also specifically asked about their attitudes to vaccination and their main reason for homeschooling, which will allow us to look at the association between vaccination status and health outcomes in children whose mothers are for or against vaccination. Questionnaires are used in conventional medical research. Two famous studies, the Nurses Health Study and the Behavioral Risk Factor Surveillance Study, are both based on mailed questionnaires.
Q: Does limiting the reporting to formally diagnosed health conditions necessarily lead to a skewed result in that parents' decisions to go to the doctor vary widely based on economic factors and a host of other completely subjective factors?
A: Depending on the sample size it may be possible to answer this complex question because the investigators are asking about family income as well as uses of preventive health services and emergency services. The likelihood of particular diagnoses being influenced by family income or the use of health services could therefore be directed assessed
Q: Would this be a basis for criticizing or dismissing the outcome?
A: Family income and/or willingness to access health services will likely have limited impact on the likelihood of a child receiving a given diagnosis.
Q: Also, would this study assume that diagnoses are accurate? What effect might that have on the accuracy of the final results?
A: Yes, the study assumes that physicians mostly make accurate diagnoses. The limited amount of inaccuracies in diagnoses are unlikely to adversely affect the results because some of the diagnoses of special interest in this study are based on criteria that are relatively objective.
Q: How easily could such a study just be ignored, covered up, dismissed, etc. as has occurred with the decades of other studies showing problems with vaccines that have never seen the light of day? Why would this study be any different? What is really the larger problem, the politics (corruption, conflicts of interest, pharmaceutical control of media, etc.), or the lack of science? How far would $900,000 go toward exposing the corruption, conflicts of interest, etc.--to get a light shown on the studies that have already been done? Does it even matter how wonderfully this study would support an informed choice position on vaccines if the media will never report on it and no one ever hears about it?
A: Is this a justification as to why such a study should never be done?
Q: Has anyone already done a thorough search of the literature to see what else is already out there that is in any significant way similar to what this study proposes to do? E.g., I heard of a study years ago that looked at children's health before and after vaccination--the children were their own controls--and found that common childhood illnesses increased by a rate of 4-5 in the month following immunization compared to the month preceding it. Has anyone considered doing a review of what's already out there related to this matter, and wouldn't that cost a lot less? Would such a review potentially provide support for this kind of study?
A: See end of this doc for many references. This study, comparing the health outcomes of vaccinated and unvaccinated children, is unique in being based at an academic center. The study is also unique in focusing on homeschool children, who have lower vaccination rates than children in the general population. A study comparing vaccinated and unvaccinated children has been widely recommended for many years but for many reasons has not been carried out to date. This study will require at least $900,000 in funding and will provide strong evidence related to the outcomes of the routine childhood vaccination program.
Q: Do I understand correctly that this study would look at the broad connections between vaccines and chronic disease, but not be able to draw a causal relationship between the two? If this a necessary prerequisite to studies exploring the mechanisms by which the injuries actually take place? Wouldn't the latter be required to nail down the connection between any specific vaccine and injury or death?
A: This study is a cross-sectional observational survey. Unlike a randomized controlled trial, this type of study design does not allow conclusions about causality to be drawn. However, if differences in health outcomes between vaccinated and unvaccinated children differ greatly in magnitude (e.g., more than two-fold differences), then that will suggest the likelihood of some sort of causal connection, which can be explored in future studies. Because many acute and chronic conditions and many potential risk factors are being studied in addition to vaccination history, related to environmental exposures and maternal experiences, the study will provide a rich database for addressing a host of questions related to vaccination and health.
Brief Comment on the Project to Date (from the investigators’ summary)
Title: Vaccination Status and Health Outcomes among Homeschool Children
Background and Rationale In response to public concerns regarding the measles, mumps and rubella (MMR) live-attenuated triple vaccine, over 20 well-designed epidemiologic studies have been carried out, all showing no association between MMR and autism spectrum disorder (ASD). There is also no known biological mechanism for such a link. However, recent Vaccine Court decisions as well as a number of studies purporting to show a link between vaccination and chronic illness have led to growing public fears of vaccine adverse effects. In fact, studies on the safety of the routine vaccination schedule are widely acknowledged to have been insufficient. To prevent public confidence from being further eroded and to stem declining rates of vaccine uptake, studies are needed to evaluate the impact of the vaccination schedule itself.
Objectives and Specific Aims The purpose of this cross-sectional study is to evaluate the health outcomes of the routine childhood vaccination program. To this end, an anonymous online survey will be carried out on biological mothers of homeschool children, regarding the children’s vaccination history and physician-diagnosed illnesses. The specific aims are:
1. To test the hypothesis that there are no significant differences in prevalence rates of selected chronic illnesses (ADHD, allergy, asthma, autism, type 1 diabetes, learning disability, and seizures) between vaccinated and unvaccinated homeschool children ages 6-12 years, after controlling for potential confounding factors; and
2. To determine what factor or combination of factors, including vaccination history, is most strongly associated with the selected conditions.
Methods Our preliminary research has shown that about 15% of homeschool children are unvaccinated. Since there are 1-2 million such children in the U.S., homeschoolers are an ideal group for this study. Families will be contacted through homeschool organizations via a partnership established between the investigators at Jackson State University and the National Home Education Research Institute (NHERI), Salem, OR. NHERI will contact and inform homeschool organizations nationwide about the study. The leaders of these organizations will in turn encourage their members to participate in the study by accessing a designated website. Mothers will be asked to use their children’s vaccination records and to record physician-diagnosed illnesses. The accumulated data will be checked for accuracy and completeness and analyzed using SAS (SAS Institute, Cary, NC, version 9.2).
Expected Results and Significance The study, now being piloted in the four states of Florida, Louisiana, Mississippi and Oregon, is expected to show that, among the population of 6-12-year-old homeschool children in the U.S., there are no increased risks of chronic illness associated with the routine childhood vaccination schedule. The study will have important implications for public health policy and practice related to children's health and health services.
Comment -- This web-based cross-sectional survey of biological mothers of homeschool children ages 6-15 years has received ethical approval from the IRB of Jackson State University. In Year 1, which has just ended, the data collection instrument was designed and a small pilot study was carried out in four states: Florida, Louisiana, Mississippi and Oregon. Although the investigators now have sufficient data on which to base tentative conclusions, they intend to use the pilot study as a learning experience and to roll out the study nationwide in Year 2. The analyses will be performed and reports written up and submitted for publication in Year 3. Important lessons have been learned from the pilot study that will be implemented in the full study, e.g., the age-range will be expanded from 6-12 to 6-15 years, to allow for increased enrollments. The investigators also intend to engage more directly and fully with the homeschool community in order to increase enrollments. Additional changes to the data collection instrument are also being considered. Implementing this study is widely recognized as a critical step in the overall evaluation of the routine childhood vaccination program. I sincerely hope that Generation Rescue’s open request for additional funds from interested parties will enable this study on the health outcomes of routine vaccination to be completed.
The JSU investigators have done a thorough job in pulling most of the pertinent studies. Here are their cited references: At the end are more vaccinated/unvaccinated studies, none of which have looked at the issue as this study promises to.
REFERENCES
Akinbami LJ, Moorman JE, Garbe PL Sondik EJ. Status of childhood asthma in the United States, 1980-2007. Pediatrics 2009; 123 (suppl 3):S131-S145.
Andrews D, Nonnecke B., Preece J. Electronic Survey Methodology: A Case Study in Reaching Hard-to-Involve Internet Users. International Journal of Human-Computer Interaction 2003;
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Afzal MA, Ozoemena LC, O’Hara A et al. Absence of detectable measles virus genome sequence in blood of autistic children who have had their MMR vaccination during the routine childhood immunization schedule of UK. J Med Virol 2006; 78:623-630.
Baker JP. Mercury, vaccines, and autism: one controversy, three histories. Am J Public Health 2008; 98:244-253.
Bielick S, Guzman L, Atienza A, Rivers A. Using a seeded sample to measure responses among homeschooling households. Survey Practice, December 2009. Retrieved January 15, 2010 from http://surveypractice.org/2009/12/09/homeschool/.
Bitnum A, Shannon P, Durward A, Rota PA, Bellini WJ, Graham C, Wang E, Ford-Jones EL, Cox P, Becker L, Fearon M, Petric M, Tellier R. Measles inclusion-body encephalitis caused by the vaccine strain of measles virus. Clin Infect Dis 1998; 29: 855-61.
Blanchard LT, Gurka M, Blackman JA. Emotional, developmental, and behavioral health of American children and their families: a report from the 2003 National Survey of Children’s Health. Pediatrics 2006; 117:e1202-e1212
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Centers for Disease Control and Prevention. Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008. MMWR 2012; 61(3):1-19.
Choi BK, Manning ML. The immunization status of home-schooled children in America. J Pediatr Health Care 2010; 24:42-47.
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D’Souza Y, Fombonne E, Ward BJ. No evidence of persisting measles virus in peripheral blood mononuclear cells from children with autistic spectrum disorder. Pediatrics 2006; 118:1164-1175.
Dillman DA. Mail and Telephone Surveys: The Total Design Method. New York: Wiley-Interscience, 1978.
Directory of State Homeschool Organizations throughout the U.S., http://www.homefires.com/state.asp, retrieved 3/26/2008.
Eskenazi B, Rosas LG, Marks AR, et al. Pesticide toxicity and the developing brain. Basic Clin Pharmacol Toxicol 2008; 102:228-236.
Felitti VJ, Anda RF, Nordenberg D, Williamson DF, Spitz AM, Edwards V, Koss MP, et al. The relationship of adult health status to childhood abuse and household dysfunction. Am J Prev Med 1998; 14:245-258.
Folkerts G, Walzl G, Openshaw PJ. Do common childhood infections 'teach' the immune system not to be allergic? Immunol Today 2000; 21:118–20.
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McDowell SA, Ray BD (Eds.). The home education movement in context, practice, and theory: Editors’ introduction [Special double issue]. Peabody J Educ 2000; 75(1 & 2):1-7.
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Wiebel RE, Caserta V, Benor DE, Evans G. Acute encephalopathy followed by permanent brain injury or death associated with further attenuated measles vaccines: a review of claims submitted to the National Vaccine Injury Compensation Program. Pediatrics 1998; 101(3):383-387.
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Here are a few more from me:
In
1992, a New Zealand group called the Immunization
Awareness Society (IAS) surveyed 245 families with a total of 495 children.
The children were divided with 226 vaccinated and 269 unvaccinated. Eighty-one
families had both vaccinated and unvaccinated children.
The differences were dramatic, with unvaccinated children showing far less
incidence of common childhood ailments than vaccinated children (http://www.vaccineinjury.info/images/stories/ias1992study.pdf).
From a different survey in the South Island New Zealand city of Christchurch, among
children born during or after 1977, none of the unvaccinated children had
asthma events where nearly 25% of the vaccinated children were treated for
asthma by age 10 (http://www.vaccineinjury.info/images/stories/ias1992study.pdf).
Many of the comments from non-vaccinating parents to VaccineInjury.info for the ongoing Bachmair survey mentioned
vaccination danger and developing true immunity naturally were concerns (http://www.vaccineinjury.info).
Learn more: http://www.naturalnews.com/036220_vaccinated_children_disease_allergies.html#ixzz2Ekk1gUaY
One simple study would be to compare the age of SIDS deaths... that start & peak I believe at 2-4 months of age
to the eight doses of vaccines given at those times.
The graphs would be a nearly perfect match.
Posted by: cmo | January 22, 2015 at 01:51 PM
Whatever happened to this?
Posted by: Tim Lundeen | January 22, 2015 at 01:22 PM
I hope that AofA continues to post this reminder every month, and that even if all the money cannot be gathered at once, that enough can be gathered on an ongoing basis to continue the study. @ 30k per month, that's about what? 18 or 19 months?
Posted by: Jenny | January 18, 2013 at 12:35 PM
Wow, Lisa... you call me over emotional? You're so overwrought by my own observations about homeschooling that you can't even stay on topic. Did I say anything about public school children? No, I didn't. My observations and comments are based on homeschoolers which precipitated from your initial assertion that homeschoolers are more likely to be in denial about autism and their affected children. And I called bulls*** on that. Don't like it? I don't care. No professional really seems interested in the autism parents' observations anyway. We are routinely dismissed, discounted, ridiculed, exluded, and ignored by the oh so caring and compassionate professionals so your "dismissal" of me is at best irrelevant. Besides, I dismissed you and your ilk over a decade ago so you're a little late on that one. You people are so busy tooting your own horn so loudly about how you 'help' and how you 'save', as is evidenced by your most recent post, that you can't possibly hear any parent's voice over it. You all think you know everything about OUR kids and the one lesson I learned fast and early on is that you all know NOTHING. So again, I applaud the scientists in this study who recognize that ALL autistic kids count, not just the ones the 'professionals' deem worthy of observation.
Posted by: CureNOW | January 14, 2013 at 11:04 AM
It is remarkable how fastidious the other side are about research until it comes to their own - then any junk goes.
Posted by: For Lisa | January 14, 2013 at 10:40 AM
Okay CureNow, I understand that I'm dealing with an overly emotional, unreasonable person. Let's hope that the people in charge of this study can be more objective than you. Otherwise, it will have no value and will be easily dismissed by critics. If all parents of children on the spectrum are so observant and so open to admitting that there is something wrong with their child, then why did I have a boy in my fourth-grade PUBLIC SCHOOL classroom last year who was finally, upon MY recommendation, tested by the school psychologists and found, for the first time at the age of TEN, to have autism spectrum disorder? Maybe it was because he had a lousy pediatrician. Maybe it was also because he had lousy teachers in his primary grades, who were willing to pass him from grade to grade without intervening, even as he screamed and cried and had very public meltdowns in the classroom, day in and day out. And maybe it was because he was his parents' only child, and they had no other children to compare him to. Maybe THAT was because they worked all the time just to keep their heads above water and did not spend a lot of time watching their son interact with other children. AND maybe, just maybe, it was also because they were in DENIAL (big time) because they were AFRAID of the repercussions. And when I taught kindergarten two years ago, why did it take me all of three days to identify one of my students as autistic (with all the classic signs) even as his parents appeared to have no clue?? Do you think that this study should only count the data from parents who are on top of everything -- able to figure out when something is wrong with their child and willing to go searching for help, beginning with an accurate diagnosis? If so, how are the researchers going to be able to distinguish among all the parents in their study and throw out the data from parents who are living in the dark, either unknowingly or deliberately? These questions I now submit with hopes that the researchers will take a look at them, because I have dismissed you, CureNow, as someone who should not be involved in science in any way, shape or form.
Posted by: lisa | January 14, 2013 at 09:52 AM
"What I merely meant to say (please read my post again) was that a parent who IS home-schooling and IS IN DENIAL is more likely to stay that way, without the help of us low-life "professionals," who, by the way, have the benefit of comparing their children to 20 to 30 other children, day in and day out, who are roughly the same age and are supposed to be reaching critical milestones at roughly the same pace. So yes, I believe there is a BIG RISK that, within the home-schooled population"
Lisa, you seriously need to get over yourself. Are you actually saying that only the public school teacher can compare a particular child to other children? Are you suggesting that a parent can't possibly be able to compare their child's development/abilities to that of other children? Because I assure you, that parents certainly can and do make those comparisons every day on the playground, the little league baseball field, in the Girl Scout troop, karate class, Mommy and Me, and on their very own streets when the neighborhood kids play outside. And they make those comparisons without the benefit of professionals and very often before their child is even of school age, i.e. long before the child ever sets foot in a classroom. A parent knows when something is wrong. Ask any autism parent here.... many knew something had gone terribly wrong long before any professional diagnosed their child. Further, it is often the child's behavior or lack of language, eye contact, or some other important ability that prompts the parent to seek out help rather than a doctor or teacher making an initial recommendation. Homeschooling doesn't occur in a vacuum. Homeschooling parents and their children ARE out in the world and ARE aware of when progress is made and when problems arise. And for you to suggest otherwise, that only teachers (and not the child's actual parent, the person the child lives with) could possibly make these comparisons, is what is truly rude here. Further, to suggest that this is why homeschooled children would threaten the validity of the study's findings is misleading and discriminatory.
Posted by: CureNOW | January 13, 2013 at 08:19 PM
Lisa,
Let me tell you why I'm not buying your argument: in many cases the parents are trying to figure out what is wrong with their child but the pediatricians are the ones in denial and downplaying the issue. And that is for a simple reason: it is the pediatrician's fault! They were the ones giving the vaccines. In our case, that is exactly what happened. I kept arguing with our pediatrician that something was wrong and he kept telling me "some children take longer". It took me to go to a naturopathic doctor to get the word "autism". And when I mentioned to my pediatrician that it was the vaccines, he quoted prOfit. Since then I know why he was in denial. But it was not us. We just didn't know...
Posted by: Anna | January 13, 2013 at 07:28 PM
Why not do the study in Canada and focus on in-school kids there? Canada has no restrictions for unvaccinated kids entering schools. There are millions of vaccinated and unvaccinated in-school children of all ages and canada has nearly identical vaccination programs to the US. Just a thought.
Posted by: Dave | January 13, 2013 at 07:26 PM
CureNOW, what an incredibly rude response to an honest post from a teacher who has, on more than one occasion, had the very unpleasant task of having to tell parents WHO WERE IN COMPLETE DENIAL that their child was struggling in school much more than average and that I was going to have to recommend him/her for developmental screening. Perhaps you are not aware of it, but such parents do indeed exist. And yes, those parents DO SOMETIMES NEED THE HELP OF LOW-LIFE TEACHERS LIKE ME, in coming to terms with reality so that they can begin the admittedly arduous task of trying to get their children the help they need. However, I did not mean to suggest that parents who are home-schooling are more likely to be in denial than their non-home-schooling peers. What I merely meant to say (please read my post again) was that a parent who IS home-schooling and IS IN DENIAL is more likely to stay that way, without the help of us low-life "professionals," who, by the way, have the benefit of comparing their children to 20 to 30 other children, day in and day out, who are roughly the same age and are supposed to be reaching critical milestones at roughly the same pace. So yes, I believe there is a BIG RISK that, within the home-schooled population -- at least for those children who NEVER attended public school, as opposed to those who were pulled out of public school because they were struggling and weren't getting the help they needed -- some of the high-functioning autistic children will not yet have been identified. This could throw the entire study off significantly. Namely, there may appear to be much less difference in rates of autism between the vaxed vs. unvaxed home-schoolers than there actually is. I am especially concerned about this because the most recent trend, at least in my own school system, appears to be toward fewer kids at the low-functioning end of the spectrum, but just as many or more kids at the high-functioning end. All are still autistic, nevertheless, and need to be counted as such.
Posted by: lisa | January 13, 2013 at 06:47 PM
Is there a possibility for the next study phases to also look at obesity levels in both groups?
Posted by: Jeannette Bishop | January 13, 2013 at 03:55 PM
Cross your fingers that I someday win the lottery.
That is what I am depending on to support my son in the future.
And if I do -- I'll donate a large sum to this study.
Mean while my small amount is going in the mail.
Shoffner I see was one of the doctors looking at Hannah Poling.
He is back down in Alabama - not working at Emory Clinic, not working along side Dr. Cohen at Cleveland Clinic - it looks like he is not in research anymore?
I hope he is not being punished like Dr. Wakefield?
Posted by: Benedetta | January 13, 2013 at 03:51 PM
Lisa, what a load of nonsense. Homeschooled kids are no more often undiagnosed or misdiagnosed than publicly schooled children. In fact, many autistic kids are homeschooled simply because they ARE autistic. Many parents fear their child being bullied, misunderstood, and not getting their educational needs met so they keep them home to ensure their child gets the best start and most opportunities in life. And just because a parent homeschools does not mean it is any easier for them to remain in denial than a public school parent. ANY caring parent knows when something is wrong with their child. And for you to imply that they don't or won't or can't without the 'help' of a professional such as yourself demonstrates the arrogance and condescension an autism parent faces everyday from those who think they know what's best for other people's children. The homeschoolers, whether their kids are typical or autistic, are doing just fine without you and I applaud the scientists conducting this study for not discriminating against them.
Posted by: CureNOW | January 13, 2013 at 02:21 PM
I want to support your statement that the home school community is not, as is being charged, a homogeneous population. Parents home school for a long list of reasons. They come from all different backgrounds, philosophies and religions, and contrary to what has been suggested, their children are not locked away from society all day. In fact, as you point out, they are engaged in the community in various activities and pursuits, earlier and more frequently than their public schooled counterparts. Many travel extensively as part of their education. "Home" schooling has been regarded as a misnomer, in that many home schoolers do not spend a lot of time at home.
I disagree that these parents are more likely to be in denial. Parents who choose to take responsibility for their children's education are more likely to be in tune to their children's unique personalities and needs, and growth and development. They are more likely to know exactly what their children's abilities and difficulties are. It is true that some home school because their children have not done well in public school and some because their children are medically fragile. It is true that some high functioning children with ASD or certain learning disabilities might not be diagnosed by a physician until those children are needing to obtain standardized testing accommodations, as they would need, for instance, for college boards. Parents understand that in return for the time and money spent for a formal diagnosis, that they will get little more than a handshake - often deemed not worth it until formal accommodations are needed. Schools require a formal diagnosis in order to provide accommodation for public schooled students, so a public schooled child is likely to be formally diagnosed early, close to when difficulties develop. Children's unique needs are naturally accommodated in the home school setting, where children with LDs and high functioning ASD often excel and thrive. So if you are only counting those with formal diagnoses, you are likely to miss many of these cases, especially in the younger population of the home school community. If you incorporate parent reporting, you will pick up on LDs and high functioning ASD that you will otherwise miss.
Conversely, if you study only the public school population, you will have the opposite problem in that you will encounter over and inappropriate diagnosis of normal children who are unable or unwilling to withstand the shortcomings, stress and demands of institutionalized schooling. You are then studying children under constant stress, a variable which would certainly impact your results.
On the other hand, in studying the home schooled, if you find that unvaccinated (and vaccinated, for that matter) home schooled children are healthier than expected, than you may unwittingly indict institutionalized schooling as an unhealthy environment. (Free range animals are always healthier and require less veterinary care/medication/antibiotics than live stock kept in CAFOs - same principal, different species).
I understand that the intent is to compare the health of vaccinated and unvaccinated children. A side benefit may be that the study will reveal significant differences between the health and well-being of home and public schooled children.
You have my support. Thank you for taking on this very difficult, extremely important, study.
Posted by: Linda | January 13, 2013 at 02:04 PM
This study looks interesting and I have made a donation to support it. However, as an elementary public school teacher, my one major concern here is the focus on home-schoolers, specifically for this reason: In my five years of teaching, I have seen numerous children on the autism spectrum who not only entered kindergarten with no diagnosis but actually made it all the way to third or fourth grade before they were finally identified. In some cases, I have felt very strongly that any pediatrician with half a brain should have been able to spot the child's developmental disorder in his/her office by the time the child was 4 or 5. Yet, it wasn't happening (maybe because pediatricians today spend so little time actually examining and interacting with their patients). And the parents were often in complete denial, which strongly contributed to the delay in having their child identified. Public schools today are notorious for looking the other way for as long as possible. Teachers are overwhelmed, and the child study process is often long and tedious. I know many teachers who will no longer bring ANY CHILD up for child study, regardless of how obvious and serious the problem, because they don't want to be bothered with all the paperwork. Still, if a child on the spectrum is enrolled in public school, he or she still stands a good chance of EVENTUALLY being identified. Your study, on the other hand, will be based exclusively on home-schooled children. It seems far more likely to me that a child who is home-schooled and not properly diagnosed by a pediatrician might NEVER be identified during his/her school-age years, particularly if he/she is on the high end of the spectrum. It just seems like it would be far easier in the home-schooled environment for a parent to remain in denial -- at least until the child reaches young adulthood and is unable to hold down a job. So... again, I'm so glad that you're taking this on, and I do hope you get some clear results, but this one aspect of the study -- the focus on home-schoolers -- does concern me for that reason.
Posted by: lisa | January 13, 2013 at 10:18 AM