May 8, 2017
Update: Since this blog post was published, the Journal of Translational Science (Open Access Text) has retracted the study.
My mom sent me an article with a very intriguing headline: “The first-of-its-kind study of vaccinated vs. unvaccinated American homeschooled children shows who is really ailing…and parents should be worried.”
Yikes. I immediately knew if what they were saying about unvaccinated homeschoolers was true, it would cause major upheaval in the vaccine debate.
The main image promoting the article said this about vaccinated children:
This study brought the vaccine debate to my home turf: homeschoolers. I spent a majority of my education as a homeschool student (that enabled me to graduate with a masters degree at 18). Many, many of the people I know and love homeschool their children. I grew up going to homeschool conferences. Our family attended a church that was primarily composed of homeschoolers. Most of my childhood and young adult friends were homeschooled, and many of those friends are homeschooling their own children now.
The homeschool community is my community. All of my experience with homeschooling moms has taught me that they are some of the most self-sacrificing, loving, hardest working human beings on the earth. They would do ANYTHING to make sure their children are safe. Homeschooling is a beautiful thing, and an option that I will likely pursue one day for my own children.
As I clicked through to read the article from my mom, I knew it would immediately strike a chord. It was like my worlds aligning: homeschooling and vaccines.
I’ve spent the better part of the past 10 years discussing vaccines with people who homeschool. This topic is very important within the homeschool community. I immediately dove right into the full text of the survey published on Open Access Text with eyes wide open.
Here’s a few things everyone needs to know about this article on vaccinated vs. unvaccinated homeschooled children in America, especially my homeschool friends.
This was a survey of mothers not a research study of children.
Why was this a survey? Because it was based on the mother’s personal reporting. There were absolutely no medical charts obtained or analyzed during this survey. All of the findings were based on what the mothers self-reported. All of them. The self-reports were not verified through medical documentation whatsoever. All of the collected vaccine information? It came from what the mothers said their children were given. All of the children’s medical diagnosis? Again, came from what the mothers said their children had. It is critical to analyze the rest of the survey through that lens. (I’m not saying homeschool mothers are incompetent reporters. That couldn’t be further from the truth. But it’s important to understand that this is a moms survey, not verified, medical research. There is a big difference.)
Furthermore, no vaccine record was collected from any of the participants. The dates the children had actually received vaccines was not recorded or analyzed. In any vaccine study, the timing that vaccines are given is immensely important. This survey overlooks that entirely.
They go on to categorize children into 3 groups: vaccinated, partially vaccinated, and unvaccinated. However, one would wonder what “partially vaccinated” meant to the mothers answering the survey? The authors wrote that partially vaccinated meant some but not all vaccines. However, what if the partially vaccinated group delayed vaccines? What if the fully vaccinated group delayed vaccines? I can tell you from my time in practice and my time in the homeschool community, delaying vaccines is a very popular vaccine route. We don’t know when vaccines were given in this survey. The authors wrote, “dates of vaccinations were not requested in order not to overburden respondents…”
The authors clearly don’t understand homeschool parents like I do. Writing down a few dates for the purpose of collecting quality research does not “overburden” parents who are gifted enough to take on both the role of parent and teacher to their children 24 hours a day. The timing that vaccines are given is critical. I think all parents understand that. This survey is negligent to overlook this critical factor.
Also, there were only 666 children involved in the survey. For a vaccine study, this is a small sample size. Most valid vaccine studies have thousands of children involved for credibility. When you read further, they actually surveyed 415 moms, so around one third of the group were siblings and had the same parental structure in place. That further reduces the true sample size.
This small sample size becomes a problem when the authors write things like this, “preterm birth combined with vaccination was associated with a 6.6-fold increased odds of neurodevelopmental disorders.” Well, how many children are they actually talking about? Do you know how many children in this study had a neurodevelopmental disorder and a preterm birth? You have to read the full text of the study (and not just the quick numbers in the article) to know the actual amount. Twelve. I repeat, twelve children. That’s not nearly enough of a sample size to make such a strong, correlational statement.
The small sample also revealed interesting results in the partially vaccinated versus fully vaccinated children. The partially vaccinated children were more likely to have allergies (47 to 43), more likely to have autism (11 to 8), more likely to have “any chronic condition” (94 to 84) and were equally likely to have a neurodevelopmental disorder (21 to 21). Again, we don’t fully understand what partially vaccinated means (because we don’t know how many vaccines were given or when), but they were “sicker” than the fully vaccinated children in many categories.
Healthcare Under-Utilization & Under-Diagnosis
Homeschool families are less likely to utilize health care services. There are many reasons for this, but the self-reported statistics from this survey seem to confirm this. According to the mothers, only 16% of unvaccinated children had a sick visit to their doctor in the past year. That is astonishingly low. This doesn’t mean the unvaccinated children didn’t get sick in the past year, it only means that they didn’t see a doctor. Furthermore, according to the mothers, only 37.2% had a check-up in the past year. Again, just under two-thirds of children not having a check up is astonishingly low compared to national averages. Why is this?
When it comes to pediatrics and homeschoolers, I’ve found that many parents don’t want well-care, because they don’t want to feel pressure to vaccinate. It’s easier to avoid the pediatrician altogether than it is to explain why they don’t want to vaccinate or want to delay vaccinations. Medical cost is also regularly a barrier (especially considering most homeschool families only have one income). I’ve also found that a large amount of homeschoolers simply don’t believe in the American structure of well-care and tend to want as minimal intervention as possible. Additionally, homeschool families often don’t seek treatment for simple illnesses that don’t require a doctor’s visit, because they don’t have to provide a note for missed school days.
While I believe in vaccines and well-care, and want homeschoolers to utilize these services, I don’t particularly take issue with this. For the purpose of reviewing this survey, however, the under-utilization of medical care further complicates the measuring of mother’s self-reports of their children’s diseases. How do children have diseases without being seen by medical providers? Again, we wouldn’t know without a thorough review of medical documentation, which the authors did not do.
This leads us to the issue of under-diagnosis. Under-diagnosis usually goes hand and hand with people who are less likely to utilize health care. It’s only logical. (Before anyone gets upset, under-diagnosis is almost never negligent, it’s almost always due to other factors.) The homeschool community is no exception to this. However, under diagnosis is extremely important when it comes to measuring and comparing neurodevelopmental disorders, autism, ADHD, and learning disorders as this survey purports to do. To fully understand the element of under-diagnosis, you have to understand some homeschooling philosophy.
Homeschooling was created to accommodate the learning needs of the individual student. This is one of the wonderful advantages of homeschooling. It’s built on an extremely small student(s) to teacher ratio, and provides a completely different learning environment.
I think it’s important to know how medical providers generally diagnose neurodevelopmental disorders, autism, ADHD, and learning disorders in children. There are three common methods:
Homeschool is unique in that the parent is the teacher, and there are no classmates to fall behind. There is no comparison when the teacher to student ratio is one-to-one.
So, are learning disorders, ADHD, neurodevelopmental disorders, and even autism easier to identify when a child is in a classroom of 30 students compared to a homeschool student? Yes. The characteristic symptoms of these disorders usually come to light faster in a traditional classroom environment. Furthermore, I’ve seen children with all of these diagnoses thrive in a homeschool environment. Sometimes, a one to one ratio is exactly what children with learning disorders, ADHD, neurodevelopment disorders, and autism need.
If children are thriving in their homeschool environment, why would a parent believe they need to be evaluated or diagnosed? Under-diagnosis is the natural outcome, usually because homeschooled students are doing so extremely well in the environment their parents have created for them.
It’s an inherent flaw in this survey to have homeschool mothers self-reporting these diagnoses without any type of medical confirmation.
Funding & Publication
After reading through this survey for a good 90 minutes, taking notes, and analyzing everything they wrote and their citations, I got to the one of the very last sections: funding sources. The authors disclosed that they were funded by Generation Rescue, Inc and the Children’s Medical Safety Research Institute. While the names of these organizations sound nice, what you may not know is Generation Rescue is Jenny McCarthy’s autism organization. Jenny McCarthy, an actress, has been openly anti-vaccinations for over a decade now. I found it particularly disconcerting that the same homeschoolers who wouldn’t want their children to watch what she produces became the subject of a survey she paid for, and now many of those same homeschoolers are unknowingly turning to this survey she funded for guidance on their children’s health. The Children’s Medical Safety Research Institute is also openly anti-vaccination.
It also appears that the Age of Autism collected donations to help raise money for this study. In fact, they were raising $500,000 dollars to fund this study. I can’t figure out how it could possibly cost $500,000 to collect this survey. In my mind, ten of my well-connected homeschool friends, a $50 subscription to MailChimp’s email service, and a free Google form could get the job done, but, nonetheless, this money was raised.
This information about the funding does not invalidate the findings of the survey (the methodological problems explained above do), but it raises suspicion as to their motivation. Funding matters when you are evaluating the context of a study, and I would similarly question any vaccine studies produced by pharmaceutical companies.
It is also important to make a note about where this article was published.
The authors tried to have this published months ago through Frontiers (a generally well-respected journal), but because of the many issues identified above, they wouldn’t publish it. So now, the authors turned to publishing in Open Access Text. This is a pay to publish site, meaning, the authors paid to have this survey published. You can see the fee schedule here. They paid $2000 to publish their results. As Vaccines Work put it, “Reputable scientists don’t pay to publish their studies. Journals like Pediatrics or Vaccines or The Lancet don’t require authors to pay, and they are considered far more respectable when it comes to considering authors for professorship positions. Scientists know these facts.”
Taking all of these things into account, it is clear that this is a survey of a very small group of mothers with egregious methodological issues, paid for by organizations that are adamantly anti-vaccinations, published simply by paying a fee. That is not research, and it is certainly not the grounds for making parenting decisions about vaccines.
But do you know what really breaks my heart about this? More than just the fact that this erroneous survey has been shared thousands and thousands of times, it is so saddening when “evidence” is created and then spewed in such a sensational way as to immediately scare and frighten unknowing parents. Parents who do not have the time to painstakingly comb through the article and find its critical flaws. For most people, that initial terrifying title will likely be the only thing impressed on their memory. And it’s wrong.
It’s especially harmful to drag the homeschool community I came from, the community I hold near and dear to my heart, into this version of “science.” A community that I have long feared is at an alarmingly high risk of contracting infectious diseases due to the climbing rate of vaccine delay and hesitation. Reading this survey without fully understanding it would cause any parent to immediately have one of two conclusions:
Not only are both of these conclusions wrong, they are damaging. The first one is wrong because vaccines are safe. If you want to read a wonderful study of vaccinated versus unvaccinated children, read this. A study of over 13,000 children concluded:
“In addition to atopic disorders, we further compared diseases—such as obstructive bronchitis, pneumonia and otitis media, heart disease, anemia, epilepsy, and attention deficit hyperactivity disorder (ADHD)—in unvaccinated and vaccinated subjects. No relevant differences in the lifetime prevalences were found, neither for different age groups nor between girls and boys.”
What differences did they find? The unvaccinated children were substantially more likely to contract vaccine-preventable infectious diseases than the vaccinated children.
The second conclusion, “What type of horrible damage have I caused my child from vaccinating?” is also wrong. Again, because vaccines are safe, but furthermore, it’s wrong because it is highly manipulative. I’ve seen this time and time again in practice. There are few worse things you can do to a parent than make them feel guilty for their past parenting decisions. Every parent tries the best they can with the information they have for their child.
Shame is a crushing beast. When parents are shamed for their decisions enough, they become easier to control and further manipulate. It’s the nature of shame and it’s a vicious, heartbreaking cycle.
There comes a point when I have to say no. I say no to the “research” this survey purports and I say a huge no to the method they are using to scare and shame parents into believing it.
As a homeschooler, a pediatric nurse practitioner, a once strongly vaccine-hesitant Christian conservative who became a vaccine advocate, and a believer that kindness and truth can be achieved in the vaccine conversation, I’d encourage you to say no to this, too.