Takedown: Vaccinautism

This week’s takedown isn’t a copy-and-paste status update, but instead, a statement that I’ve seen over and over, and I’d like to put the entire thing to rest, once and for all. I know that putting the entire thing to rest is impossible, but hey, it’s worth a shot. Pun intended.

The statement: “The Amish Don’t Get Autism. And They Don’t Get Vaccinations.” This is usually followed by some variation of, “Why isn’t anybody talking about THAT?” or, “Makes you think, doesn’t it?” or, “What do the pro-vax sheeple have to say now?”

The short answer: “The Amish do get Autism. And frankly, whether they get vaccinated or not has nothing to do with it.”

The Autism-vaccine connection first gained traction in 1998, when the British former doctor Andrew Wakefield published a paper in the journal Lancet which drew a connection between the MMR vaccine and autism. “Former doctor,” because his license has since been taken away. His license was taken away because the study was not just seen as misleading, but ruled as outright fraud. Fraud because his results were skewed in such a way as to make the most profit for himself and the kids in the study.

At the time, Autism awareness was exploding. Autism was first described in 1954, and diagnostic criteria (which have been revised several times) weren’t introduced until 1980. In 1998, Autism had only been described for 44 years, and had been diagnosable, in a rough way, for less than 20.

For decades, it was assumed that Autism afflicted 4 or 5 children out of 10,000. Today, it looks like the number is more like 2-7 out of 1,000, which is a staggering difference. Because the field is relatively young, because the definitions of Autism are changing, because awareness is growing and physicians are recognizing Autism more, it is difficult to say how much of this increase is a reflection of the same situation as before, and how much is actually an increase. One factor that is likely contributing is advanced maternal age, although there are still many questions surrounding the increase.

Autism is fucking scary. If you aren’t intimately familiar with Autism, the very vagueness of it is terrifying. It shows up with different symptoms for different kids, it appears to come out of nowhere, even the fact that it’s measured on a spectrum is hard to wrap your mind around. There are so many unknowns, and so many unknowables, that it is panic-inducing for many parents. Psychology tells us that an unknown outcome is scarier than a known outcome, even if that outcome is known to be bad. Today, research is still just beginning to help us understand Autism, and in 1998, less was known. It is terrifying now. It was even more so then.

I used the phrase “intimately familiar with Autism,” because kids that fall on the spectrum, it turns out, are wonderful, thoughtful, complex kids. They face many more difficulties than other kids, and their parents are challenged in ways that most parents can’t or don’t want to fully understand, but for a lot of people, the idea of Autism is worse than the disorder itself.

So it’s unknown, and it’s unknowable. What don’t we know about Autism? Well, we don’t know the cause, and it looks like there isn’t a single cause. There is a strong genetic component, as well as possible environmental components. There is no blood test for Autism, nor is there a quick and easy checklist for the layperson ““ the average parent cannot simply look at their child, say “no words by age 2, he’s Autistic.” Instead, diagnosis comes from a variety of social and behavioral skills made by a specialist, and the DSM-IV uses necessarily complicated language such as “I. A total of six (or more) items from heading (A), (B) and (C) with at least two from (A) and one each from (B) and (C).” And as far as treatment? Behavioral treatment helps some. So does medicine. For some. Diet changes make a difference, for some. Early intervention seems to be very important. But there is no silver bullet.

In other words, Autism is a disorder for which, at this point, we don’t know the cause, we don’t have a clear-cut test to diagnose, and we don’t really know the best way to treat it. The unknowns are overwhelming, and are terrifying. And in 1998, they were even more unknown, and even more terrifying.

So Wakefield’s study came at a perfect time, in terms of spread-like-wirefire-ability. Parents were desperate for definitive information. A connection between vaccines and Autism was like a lifeline for many, especially those who were skeptical about the medical establishment to begin with. It was so tempting to believe it, and it was so tempting to extrapolate from it, and to elaborate on it. If vaccines were the cause of Autism, it would give parents a sense of control. My kid doesn’t have Autism because of something that I did. For many parents with Autistic children, it gave them something to rage against. Autism isn’t something unknown and unknowable, it’s something that the government forces upon our children.

It was tempting because of timing, too. Children get most of their vaccines before they are 2. Autism has an average diagnosis age at 3.1 years.

Think about this. If kids are showing signs of Autism around age 2-3, and vaccines are given by age 2, there will be some overlap. There will. Some kids will get vaccines and the next day start showing symptoms. Some kids will get vaccines and the next day start showing signs of potty training readiness. Some kids will get vaccines and the next day be able to stack six blocks and climb stairs without difficulty. It would be absurd to suggest that the vaccines cause these developmental milestones to happen, and yet, for many, this exact same type of overlap justified a “where there’s smoke, there’s fire,” explanation* about Autism.

So people believed Wakefield’s study. Never mind that the study was performed on only 12 kids, and could not be reproduced, even though there is no shortage of kids with Autism or kids who had received the MMR vaccine. Never mind that Wakefield was, at the time, applying for a patent for the alternative vaccine to the MMR; his study would potentially drive terrified parents to choose his vaccine over the recommended MMR vaccine, potentially making him boatloads of money. Never mind that he chose children in his study that were already involved with a lawsuit against the MMR vaccine, or that he was getting paid in conjunction with that lawsuit ““ never mind that everybody involved had a vested interest in specific results being found.

It was a bad study, with non-reproducible results, with a small sample size, which was retracted. And yet, it will not die.

Jenny McCarthy, a celebrity hitherto known mostly for being the host of a dating show on MTV, lent her fame to the cause, connecting her own son’s Autism with his vaccines. Articles were written that compare the symptoms of mercury poisoning with Autism symptoms, and jumping to the conclusion that correlation is actually causation. These studies are still floating around today, even though mercury was removed from nearly all vaccines in 1999, and the rate of Autism has not since decreased.

And then there are the Amish. Dan Olsted, author of The Age of Autism, went to Amish country, asked around about Autism, and only found three cases of it, two of whom had  been vaccinated, and the third of whom he wasn’t sure about:

“So far, from sources inside and outside the Amish community, I have identified three Amish residents of Lancaster County who apparently have full-syndrome autism, all of them children.  A local woman told me there is one classroom with about 30 ‘special-needs’ Amish children. In that classroom, there is one autistic Amish child.  Another autistic Amish child does not go to school.  The third is that woman’s pre-school-age daughter.  If there were more, she said, she would know it.”

The Amish, the theory goes, don’t vaccinate, and Olmsted has proven, PROVEN! that the Amish don’t get Autism.

Except he didn’t. Because they do vaccinate (although at a lower rate than the general public, with about 2/3 of them vaccinating their children), and they do get Autism.  A recent study, published in the International Society for Autism Research, came to the conclusion that:

“Preliminary data have identified the presence of ASD in the Amish community at a rate of approximately 1 in 271 children using standard ASD screening and diagnostic tools although some modifications may be in order.   Further studies are underway to address the cultural norms and customs that may be playing a role in the reporting style of caregivers, as observed by the ADI.  Accurate determination of the ASD phenotype in the Amish is a first step in the design of genetic studies of ASD in this population.”

Preliminary numbers are showing a lower rate of Autism in the Amish than in the general population ““ but 2/3 vaccination rate versus 4/5 vaccination rate can’t account for the differences. Instead, the Amish example could give us insight into particular genetic and environmental factors that are causing Autism, if the vaccine myth would just die.

It turns out that asking around is not going to get you valid results.

So ““ the smoking gun of the Amish not vaccinating and not getting Autism isn’t, actually, a smoking gun. The one study that made a connection between Autism and vaccines was fraudulent. The mercury connection makes no sense. And Jenny McCarthy is really pretty, it’s true, but she is not a scientist, nor is she any sort of expert.

Regardless, the connection has had huge consequences:

“Still, when the public got word of Wakefield’s work, worried parents skipped vaccines, and the percentage of children who were not vaccinated in the United States rose from 0.77 percent in 1997 to 2.1 percent in 2000, according to an article by Dr. Michael Smith in the journal Pediatrics. A similar rise in children not being vaccinated occurred in Britain.  Although the U.S. Centers for Disease Control declared the United States cleared of measles in 2000, the lower vaccination rate brought back the disease in a 2008 outbreak. At least 131 cases were reported to the CDC, and 11 percent of the cases were hospitalized. A handful of children in Britain died of the measles around the time of the U.S. outbreak.”

Kids have died. From a disease which was supposed to be eradicated. Kids have died.

Here’s something else. Recently, there have been several studies that have shown a correlation between larger brain size and Autism, including a groundbreaking study from the November 9, 2011 issue of JAMA, which found a large difference in the number of specific neurons. “Specifically, they found autistic children had 79 percent more neurons in the dorsolateral prefrontal cortex and 29 percent more in the mesial prefrontal cortex than other kids.” These neurons are only generated in utero. They can grow in size after the baby is born, but the number of neurons does not change.

If what is indicated in these studies is true, and multiple studies are pointing in that direction, vaccines cannot cause Autism. The foundations of Autism are present before the baby is born.

The thing is, I get it. Being a parent is scary, and having a sense of control over a disorder that is only increasing would be miraculous. It is so tempting to believe this stuff, because if I believe it, it means I get to make decisions that will protect my kid.

But it doesn’t protect your kid, because it isn’t true. The evidence points to a lack of causation, and yet, every time more proof is given to show that there is no connection, people dig in further and try to find a different reason to believe.

Because it is so tempting. We all want to control our children’s health, and we all want to believe that we can protect them from Autism. But to spread this kind of nonsense, rather than protecting your child, is putting them, and everybody else, at a higher risk for communicable diseases  It also sets back research that can actually find answers to some of the unknowns, by clouding the issue and throwing popular support to a wild goose chase.

Let’s focus on the goal of answering the unknowns, instead of getting swept up in fear-based actions that put us all at higher risk.

*”Where there’s smoke, there’s fire,” is not science. It is a way to justify things that are not otherwise justifiable, and it is an awful phrase. As a matter of fact, this morning, my toaster started smoking. It wasn’t on fire. The phrase is meant to be a catch-all, a conversation ender, to mean “I saw something, and that justifies me jumping to conclusions.” It doesn’t, though. “Where there’s smoke, there’s fire” is the kind of argument that allowed people to believe that AIDS was sent from God to punish gay people. It basically means “stop asking questions, and let’s just make assumptions.”  It is bullshit.

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11 Comments Takedown: Vaccinautism

  1. Avatar of CesyCesy

    The small town I grew up in has a family that attributes their son’s autism to vaccination. They are a well known and respected family, so many people have drunk their Kool-Aid and believe it too. 

    There are some other crackpot ideas too, like my MIL who considered not immunising her boys because she thought “it’s fine for them to get some diseases, they’ll be ok”. Her reasoning for it was she had Scarlet Fever as a child and came out fine. Never mind the fact her children all had asthma and other issues, it wasn’t until the doctor told her that if she didn’t immunise and the boys got one of the diseases (can’t quite remember which), they could become infertile. She immunised then. She told me this story and I couldn’t believe it, I was in shock. I told Mr Cesy and he couldn’t believe it either, he was quite angry that she even considered doing that to him.

    1. Avatar of SusanSusan

      In a recent internet argument, somebody said to me that I was “literally calling thousands of mothers liars” because I said there is no link between vaccines and Autism.  No.  I was calling the people who propagate the bullshit liars, and the people who believe it have been taken in by it.  Not liars.  Gullible maybe.  Afraid for their children, yes.  Victims of a scam, even.  Not liars.  Arglebargle.

      1. Avatar of CesyCesy

        Cheers for that! Yes that does sound about right.  My sister has just reminded me we know children who have had mumps, which our Mum said she never heard of anyone getting when we were small.  Mum attributes that to the high value parents placed on vaccination in those days, and how the false debates have meant people aren’t vaccinating now and so bringing these diseases back.

        Have I mentioned that in New Zealand, vaccinations and doctors visits for under-5′s are free? So there is no cost reason for parents not vaccinating, it is purely the false information out there.

  2. Avatar of Savannah Logsdon-BreakstoneSavannah Logsdon-Breakstone

    (Sorry for wonky formatting, I’m getting a glitch on the site so I need to use line breaks
    in order to see what I’m typing in the comment field.)

    I have a mixed response to this post.

    On one hand, a HUGE HUGE HUGE thank you for taking down the Anti-vax stuff. Thank You.
    This is an excellent take down, and I’m glad to see it here. Soooooo much damage has been
    done in the name of the anti-vax folks. Additionally, I find it highly ironic that the Anti-vaxers
    don’t vax because of the more support heavy parts of  Autism plus Intellectual Disability. The
    MMR vaccinates against diseases that not only killed children, but also could cause Brain
    Damage resulting in Intellectual Disability, De-compensation or total lost of verbal ability,
    motor difficulties, and neuro-based hearing loss/d/Deafness and Blindness. Excepting the
    Last two, these are all symptoms that they are trying to avoid! How does this make any
    Sense???

    On the other, your language and framing. . . ick. I’m an Autistic Adult.  The language and
    framing you use is the same as that which has the backlash of dehumanizing, isolating,
    and stigmatizing us. I’ve suffered the backlash of statements like the ones you’ve used
    to describe Autism. It’s horrible. In fact, that backlash is the WORST part of my experience
    of Being Autistic.  It’s the one of the hardest Autism specific thing that some of my friends
    who are not as verbal as I am have to deal with, because it means that  instead of focusing
    actual  quality of life things like AAC (Alternative and Augmentative Communication; like the
    sign boards, type to talk, TTY, etc), ending abusive seclusion and restraint (including
    over-medicating aka Chemical Restraint), and least restrictive housing, people become
    fixated on Curing us or preventing us from even being born.

    The same emotions- fear- that you correctly identify as a big factor in anti-vax philosophy are
    regretfully echoed and legitimized by your framing and language. I don’t think it was your
    intent, though I’m not terribly good at reading intent.

    But damage can be done with absolutely no intent. Intent isn’t a magic wand that will make
    our screw ups not install the framework the bigotry of others is based on. (And in areas
    I have privilege in, such as race or Trans issues, I do screw up. I even sometimes screw
    up on Physical disability. I’m super thankful that I’ve learned to take call outs in a spirit of
    improvement rather than offense.) And unfortunately, your intent doesn’t make your wording
    any less reinforce the same fears that the people you are taking down base their factually
    inaccurate beliefs on.

    Scary:
    * the public image and stigma spread about Autism
    * How rarely we have a chance to direct our own care or fundraising
    * the effects of pity-based advertising
    *  The fact that many of us will face a range from stigma to out and out discrimination
    on the basis of poorly chosen framing of our issues that are designed to garner
    funding for charities or to Legitimize an already legit mourning process when a
    parent realizes that the plans they made aren’t going to happen (When it’s framed as
    mourning your child, though, that’s a problem. It’s your plans/expectations you are
    mourning, not us. Mourn for yourself- Don’t Mourn for Us.)
    * Mothers killing their children because they think they might be Autistic- including
    mothers that work for “autism charities”.
    * hate-groups saying we shouldn’t marry or have kids
    * The fact that people think it’s okay to treat us inhumanely (abusive care, Seclusion and
    restraint, ignoring explicitly state care wishes) and then claim that we either don’t know
    what we are talking about or that we aren’t competent to report our abuse.

    Not scary when given appropriate supports:
    * Being Autistic
    * being non verbal
    * being a person with a disability.

    Blaming the things in the first list on the things in the second list is victim blaming. We
    deserve none  of the things on the first list, and saying that the second list legitimizes
    them is disingenuous.

    1. Avatar of SusanSusan

      Thank you for your comment.  I am confused, probably because I do not have Autism myself so I do not know the particular language that can be offensive – can you point out to me which language/framing is harmful?  I was trying to point out that the fear of Autism is often worse than the Autism itself, because as a disorder it produces challenges but Autistic children are often wonderful, thoughtful, and caring people.  I’d like to be able to not frame the articles in ways that are hurtful, but I don’t know which part of this actually *is* hurtful.

  3. Avatar of [M] QoB[M] QoB

    Yup. And what annoys me most about this isn’t that the question – does the MMR vaccine cause autism? was asked. Asking was scientific, even if it was based on Wakefield’s nonsense. It isn’t even so much that the question was both asked and answered and yet it keeps going. It’s that this nonsense – Vaccines! Bad! – have spread to encompass not just MMR and autism but practically every vaccine and un-named ‘bad’ effects. We’ve seen this with the HPV vaccines. RARRGGH.

    1. Avatar of SusanSusan

      Yes – and a lot of it is stuff that I can alllllllllllllmost get on board with.  I love the idea of treating your body well, using natural remedies when possible, not jumping on medication unless necessary, avoiding chemicals and processed food and all that (okay, I could be better about it, but I strive).  But this takes it to an extreme that is virtually unarguable because every piece of evidence is touted as just another part of the conspiracy theory.  And then people die, or get really awfully sick, for no reason at all.

      1. Avatar of [M] QoB[M] QoB

        Indeed. I generally subscribe to “don’t interfere with the body without good reason”, and I’m cautious about taking medications, and interventions in general without good evidence about their efficacy. But vaccines and their amazing, life-saving protective effects are a great reason to interfere, with minuscule risks for the vast majority of people.

  4. Avatar of [M] freckle[M] freckle

    But it is so very hard to be unable to blame a disease on someone’s religion, color of their skin, sexual preference or political opinion!

    I love these take-down articles, well done.

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