As regular readers know, until recently, all of my kids were unvaccinated. That was for a lot of reasons, but the main was that John was strongly opposed. He believed that vaccines caused autism, and he didn't have much trust in doctors. I didn't have a strong opinion on that matter at the time, so I said that would be fine. Later, when I began to research the issue, I admit that my reasoning was somewhat motivated -- since I had already agreed not to vaccinate the kids, I didn't really want to find anything that would convince me differently. However I did think that I might reopen a discussion the subject when the kids were a little older -- perhaps a few vaccines after the age of two.
My main worries with vaccines were serious reactions or death. I saw a photo of a child that had died of a severe allergy to the Hepatitis B shot, and it really horrified me. It just seemed to me that giving a vaccine shortly after birth means you don't know what allergies they might have, whereas if the baby had been vaccinated at six months or a year old, the parents surely would have discovered his allergy by then. Another worry was SIDS, because I'd read some articles suggesting that vaccines at two and four months were the real cause of SIDS. And I do know that encephalitis can be a real vaccine reaction -- albeit a very rare one.
I spent some time trying to find out which was more likely, a vaccine reaction or my child catching a vaccine-preventable disease. But this was impossible to discover, because official sources (like the CDC) claimed that serious vaccine reactions were extremely rare, while more "alternative" sources said they were extremely common and covered up by the medical establishment. In some cases they also denied that vaccine-preventable diseases were dangerous, or that they were even caused by viruses at all (for instance, they claimed that polio was actually caused by pesticides). So if I chose a source to listen to, the decision would be easy; each had quite a convincing argument with the facts they had. But I couldn't find any common ground on the facts, which I could use to prove one or the other correct.
At the time, though, I was pretty anti-authoritarian, and the idea that the entire medical establishment was in a conspiracy to poison my children seemed pretty credible. After all, I knew just how flawed the medical community could be where childbirth was concerned, so why not vaccines? You don't need to be an evil person to be part of a conspiracy like this. You just have to be convinced it's for the greater good.
And then, of course, I read Evidence of Harm and it definitely played up the conspiracy angle. There are things that don't quite fit in that book, but it's just so packed with difficult scientific ideas it can be a little hard to catch. Whether vaccines caused autism wasn't really a big question for me, because, I mean, autism isn't death, and if it was a choice between having an autistic kid and having a kid die of tetanus, I'd pick having an ALIVE kid. But it did make me think there might be a connection. I mean, look at those skyrocketing rates!
The shift in my thinking happened very slowly. I started occasionally finding out that the government, for instance, wasn't all evil, and that some regulations actually had good reasons for existing. John won a seat on town council and immediately started finding out that government wasn't so evil as all that. Yes, sometimes it was incompetent and slow, but the people meant well and what's more, sometimes I found the right answer was the government answer. Like the way this town has tons of unsafe slums, which the free market hasn't done a thing to fix -- rental codes probably are the answer, even if someone looking at them for the first time might think they were too burdensome and detailed.
I started to feel more friendly to the medical establishment thanks to having good doctors instead of that mean one who fired Marko from his practice for not being caught up on vaccines. Our current doctor is a really sweet guy who respects my decisions as a parent and never pressured me to vaccinate. Yet many times when my kids had minor problems, he helped in ways I couldn't have on my own. He knew that Michael's round rash was ringworm and not Lyme disease. When Miriam had impetigo, he prescribed antibiotics that started working within a day, after my home remedies had failed. I started to realize that he (like most doctors) cared about his patients and had knowledge I didn't. They're not all that nasty obstetrician who wanted to give me an episiotomy without asking.
I also learned how science works, something that I wasn't really taught in school. In school they teach you the conclusions that science has come to, but they don't really explain where each discovery comes from. I learned how to read a study, that a review of many studies is better than an individual study, that a large sample size is better than a small one, that a randomized, controlled trial is better than an epidemiological study. I learned that it's possible to "chop" the data you get in a study to get the results you want, and that peer review helps catch that sort of shenanigans. And I did start to notice that most of the really high-value studies were on the side of "vaccines are safe and effective" while many of the anti-vaccine studies were small and weak.
Most of all, I realized that alternative medicine practitioners are no less likely to be sleazy than real doctors, and in fact there are fewer safeguards to prevent them from being sleazy. "Follow the money" is often used to mean "look, these studies can't be trusted because some of them were funded by pharmaceutical companies," and yet very often alternative practitioners make huge amounts of money from the treatments they peddle. Desperate people, who have been taught to be afraid of conventional medicine, pay more than they can afford in the hopes of curing ailments which conventional doctors have told them can't be cured. The quacks take their money and over-advertise their treatments, trying to convince sick people that they can cure things which have no cure. Today I read a sad article about people with ALS or other incurable conditions being told they had "chronic Lyme" and spending tens of thousands of dollars on treatment that did nothing and sometimes caused harm.
Basically, no one is entirely to be trusted, but if you have to trust somebody, doctors are probably a better choice because they have more oversight. Scientists work to create a standard of care for each condition which is proven to be safe and effective; a doctor who doesn't follow it or who is careless is subject to malpractice suits or even jail time. Whereas alternative practitioners sometimes don't have any oversight at all. And when you hear of this guy going to jail for malpractice, and that guy losing his license, and this guy is marketing cyanide for cancer treatments, and so on, you start losing faith in the alternative medicine community. You might not have proof that they are lying about vaccines being dangerous, but when they lie about so much other stuff (or are just dead wrong in obvious ways) you don't have a lot of confidence.
The last step was when, two years ago or so, I started making serious efforts to be more rational in my decisionmaking. I realized that my instinctive fear of needles and medical stuff was affecting my judgment. I also had reasoned in the past that it was better to run the risk of my child dying from something I didn't do than from something I did, because I would feel more at fault in the latter case. But I realized that whether I would feel more at fault wasn't actually a moral consideration, it was simply an emotion of mine which had no bearing on whether or not I was actually responsible. We're responsible for our actions and our omissions; inaction isn't a guarantee of not making a moral error. I also got into Kant a little bit. Kant says that we should always act in a way we would like everyone to take as a moral rule. I didn't want everyone to not vaccinate -- I wanted them to continue vaccinating so polio and diphtheria didn't circulate, while at the same time personally opting out. And that is just not fair.
There was awhile there where I thought vaccination wasn't dangerous but thought John disagreed with me. And then I found out he also had changed his mind about it, but I was too overwhelmed with life to do anything about it. And then I found out that if we wanted to put the boys in school, we had to get on it Right Away, and actually Yesterday. They're not going to be fully vaccinated in time for school to start, because of how they have to be spaced. But the health department has been wonderful working with us -- they made a nice catch-up schedule for us (at their age they don't need so many doses as a baby would) and will certify for the school that the kids are in process to be vaccinated and should be allowed to attend school. There was zero judgment about having waited this long and they have respected my right to choose what they get when. The health department is ten minutes from my house, has lots of available appointment slots, and gives all legally mandated vaccines for free to all uninsured patients, or if your insurance does not pay for them. I highly recommend your local health department if you need to get any vaccines.
Edited to add: I'll be honest, I was scared getting them their first shots. Marko was already autistic, of course, but I worried that he'd have some kind of massive regression. And that did not happen. He has made massive progress since getting vaccinated, and has never had a reaction. The other kids did not develop any autism symptoms either.
Part 2: Answers to objections
So that's the personal-journey part of this post: the main reasons why I, personally, came to change my mind. But of course there are facts in question, too, so I wanted to address some of the specific arguments that I found convincing against vaccines, and explain why they don't bother me anymore.
1. Vaccines and all-cause death
If vaccines increased the risk of death, one would expect infant and child mortality to be increasing right now. But as the number of vaccines has risen, infant and child mortality have dropped. These charts start in the 80's, so we're not talking about the invention of sanitation and antibiotics. There have been many medical advances in that time, but that does include vaccines, so it seems plausible to me that some of the reduction in mortality is due to them. Certainly wishing for a vanished time when everything was better and people were healthier is not based in fact.
2. Vaccines and autism
In this case it passes the test the previous chart missed: vaccines and autism are both increasing. The original connection was supposed to be mercury: thimerosol preservatives in vaccines contain tiny amounts of mercury, and that was hypothesized to cause brain damage. An alternative link was in the immune system -- Dr. Andrew Wakefield thought that it was the MMR, specifically the measles virus, which was somehow active in the gut and then damaging the brain. His study is generally agreed to be junk, but that doesn't prove his theory is wrong. And, I mean, look at the graph!
But let's see if we can place some important dates on this graph. I couldn't find a graph with these dates, so we'll have to eyeball it.
1971: Invention of MMR vaccine
1989: A second dose was added to the schedule
After this, the doses of MMR remained steady at two. So if the MMR caused autism, we would expect one jump in 1971 (or a bit after) and a second jump in 1989 (or a bit after) and then the rates of autism remain steady. As fascinating as the gut-brain-immune system connection is, I think the MMR theory is a flop. It can't explain the rise in autism rates.
1930's: Thimerosal first used
2001: Thimerosal is removed from all children's vaccines except for the flu vaccine. Children get significantly less thimerosal than before, and some get none (since not all kids even get the flu vaccine; it's not usually required).
So thimerosal was present in vaccines long before the autism rates started increasing, and its removal had no effect on autism rates. I can totally understand why people might have thought it was connected, but the past 16 years have pretty much destroyed that theory.
1980: The DSM-III (the official manual of psychological disorders) includes autism for the first time.
1987: The definition of autism is expanded in the DSM-III-R.
1988: The movie Rain Man is released, making most people aware of autism for the first time.
1991: The IDEA act makes autistic children eligible for special services. While previously parents would try to avoid a diagnosis to keep their child from being denied an education, now they started to seek a diagnosis in order to get their children services.
2013: Asperger's Syndrome is reclassified as autism spectrum disorder and the definition of autism is expanded again.
In short, there are very good reasons why more and more kids who are no more disabled than before are getting the autism label. Marko is one of those kids -- he is not really any more quirky than some of the older members of my family, but to get services he's been assessed a lot more thoroughly.
An objection to the increased-diagnosis theory is, "But where are all the autistic adults? Why did I never see any severely autistic kids when I was younger?" The answer to the second question, sadly, is "in institutions or denied any education at all." Before 1991 it was not illegal for a school to simply tell a child's parents they couldn't provide an education for him, and that would be that. And in answer to the first question, autistic people do continue to develop as they age. Most autistic children grow into adults who are capable of interacting more-or-less as other people do, so you might not notice them. They're your quirky neighbor or uncle. I certainly know autistic adults, diagnosed or not. And the ones who still aren't able to speak or handle a job or house ... well, where do you expect to meet them? Interacting with you is the main thing they're not able to do! But you can find them on Twitter and the blogosphere. They're certainly around.
A lot of autistic children, as well, would previously have been diagnosed as intellectually disabled. Check out this chart: as autism rose, intellectual disability decreased. Vaccines don't cure intellectual disability -- it's almost certainly the same kids just getting reclassified. Plus, of course, more mildly autistic children who wouldn't previously have been diagnosed with anything. That can be shown by a study cited here showing that the average autistic child has a much milder case than the average of years ago.
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| Source: http://www.sciencemag.org/news/2015/07/autism-rates-are-it-really-rise |
Of course when one theory is debunked, the vaccines-and-autism crowd moves to a new explanation. So when mercury was removed, they pointed out that aluminum had been added and maybe it was causing the same brain damage. But that doesn't make sense, because aluminum does not act in the way mercury does in the brain. Aluminum poisoning seems to affect memory, if anything; there is no reason to expect it to act exactly the way mercury does. I haven't yet heard a plausible theory connecting vaccines and autism besides the ones I've debunked here.
And of course anecdotal evidence can be the most powerful kind. One single story about a child having an autistic regression after shots can outweigh all the studies you've ever read. But in my case the anecdotal evidence is on the side of vaccines being harmless. Marko has always been just as quirky as he is, despite not having had a single vaccine. I will admit I was a wreck the day of the shots, terrified Marko would have a massive regression and stop speaking. But nope. He's had three batches of shots (including MMR, DTaP, polio, Hep B, and varicella) and is exactly as autistic as he was before. Maybe less, because he's had a ton of gains lately, especially in verbal fluency and social skills. It's been a huge relief to me.
3. Vaccines and SIDS
SIDS is terrifying because we still don't really understand what causes it. And it's true there is a spike between 2-4 months, which is around when babies get the DTaP. But I feel pretty well convinced it's not caused by vaccines, because the spike in SIDS deaths at that age has been well-known for over a century and is the case in all countries, regardless of when first vaccines are. Here are a couple articles demonstrating this.
Part 3: Recommendations
So with all that said, does that mean I now will abide perfectly by the recommended schedule? Eh, probably not. I believe that the recommended schedule is safe and is probably the best choice from a public-health perspective. But it is also true that part of the reason vaccines are given at such early ages is because the CDC thinks we might not show up to get them later, or because we'll already be bringing in the baby for a well check so we might as well. Not every recommendation is "do this or children die." In our state only MMR, DTaP, varicella, polio, and Hep B are required, and the rest are only recommended, so we're getting the required ones for now. I would get the recommended ones if I had babies in daycare, because most of these are for illnesses that are only dangerous in infants, and my babies don't get out much. I want to give Miriam vaccines soon (though I dread it, because she'll basically have to be hogtied) and I am not sure when to give Jackie some. Probably soon I guess? I still really recoil at the thought of poking a tiny little baaaaaby with a needle. But on the other hand, she's not so tiny now, and the doctors do say it's safe, so I'm sure I'm just having an emotional reaction here. And the nice thing about vaccinating infants is, you can nurse them as the needle goes in so they barely notice.
I would definitely recommend people get at least the DTaP, since those diseases are serious, and the MMR, since they have pretty horrifying complications in a small percentage of cases. True, if your kid got the measles, they'd probably pull through fine, but ... they might not. They might die of encephalitis or pneumonia as a complication, or become permanently deaf or sterile. It's not quite like the chicken pox. Polio, I understand you have a very, very small risk of being exposed to. It's almost eradicated worldwide. But on the other hand it isn't gone, and people travel to America all the time from foreign countries where it exists. We really should be careful to maintain a high vaccination rate so it doesn't return here. On the bright side, in a decade it may be completely gone, and then, like smallpox, there will be no need to keep vaccinating for it.
I think varicella and hep-B are kind of unnecessary. I wouldn't have gotten them on my own. But the state doesn't really give me a choice to pick and choose. There is a religious exemption and a medical exemption available, but to obtain either of these I would have to lie. I don't think that's right. Many Catholics I know claim a religious exemption when really they just don't believe in vaccines. The only part of this equation Catholicism forbids is the lying.
Now for some recommendations for vaccine advocates. Because I don't think they quite realize just how unhelpful some of their activism has been. Since it's mostly a matter of trust, attacking people just makes them close ranks and trust you less. Getting fired by a pediatrician didn't make me go "oh, guess I'll get the shots then." It made me mistrust doctors more. Getting called a baby killer didn't help. Getting called stupid didn't help. Scary stories about babies dying of preventable illnesses just gave me more to keep myself awake at night with, keeping company with the picture of the baby dying of a vaccine reaction. More fear made things worse; it made me afraid to even think about the subject. I know not everyone reacts this way, but some do, and it's probably best not to amp up the fear. I generally remind people that both vaccine reactions and vaccine-preventable diseases are rare, and the most likely result is that your kids grow up perfectly healthy whatever you choose. So all you're doing with this decision is managing extremely small amounts of risk. Of course the most responsible thing is to pick the smallest, but this isn't quite as high-stakes as it feels. Most people do vaccinate, and because of them, these diseases aren't all over the place the way they used to be, so you have the luxury of waffling a bit.
What does help? Respecting people's judgment. Building up trusting relationships. Encouraging baby steps like actually going to the doctor at all. Doctors should mention vaccines and then drop it, not lecture endlessly and pile on the guilt. And people who vaccinate partially should be encouraged rather than lumped in with people who don't vaccinate at all.
And I think everyone should remember that not every person who doesn't vaccinate is completely closed to new information. I went on a comment thread that I knew was pro-vaccination and asked for information, because I was looking into starting to vaccinate and wanted to be convinced, and instead was demonized and called names because I hadn't done it already. I was told I was responsible for the deaths of babies - even though my kids can't very well have infected babies with diseases they've never had or been exposed to. I was sent a link to a CDC site which stated that vaccines are safe. Well, of course the CDC would say that, wouldn't they? But when I asked how I could know I could trust the CDC, I was sneered at and called a conspiracy theorist. Isn't that just what someone in a conspiracy would say? ;) I wanted to know how I could know how to trust their studies and why I shouldn't trust the studies the anti-vaccine movement had, but no one even bothered to try.
This post is meant as a bit of a counter to that attitude. But I think the best way to encourage someone who doesn't vaccinate to start doing it is simply to have a conversation. Start by asking why the person doesn't vaccinate -- don't assume you know! And if they are willing to discuss it with you, research their specific objections and offer the most objective answers you can. Be kind and show that you are really listening, not dismissing their objections out of hand.
I'll close with a story from about a year ago. Marko had gotten interested in the immune system, so we watched a bunch of YouTube videos about white blood cells and antibodies and various diseases. There was one about measles, which explained that the virus attacks the immune system, leaving the person vulnerable to other diseases for months afterward. Marko found it terrifying (although it wasn't graphic or scary) because he loves his immune system and hates being sick. "Is there a cure for the measles?" he asked. "No," I said, "but there's a vaccine. If you get the measles shot, you won't get the measles." He instantly demanded, "Get me that shot, Mama!"
I guess it really hit home to me then that I was assuming the whole time that my kids wouldn't want shots. I hated getting shots, and of course if I'd given them when Marko was a baby, he wouldn't have understood the reason and would have cried. But given a chance, he's actually come out in favor of vaccines. It really soothed that feeling of "I can't let my baby get such a terrible thing!" and reminded me that this is something I do because I love my children, because I know it is best for them. Even if sometimes there are a few tears.
1 comment:
Thank you for your courage.
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