It’s a statistic that’s quoted at parents constantly, almost casually: the rate of children diagnosed with autism in the United States corresponds directly to the increase in childhood vaccinations that’s taken place over the past ten years. Here’s the problem: it’s not true. Not only is there is no statistical correlation between the rise of autism and an increase in vaccinations, but twelve separate studies have shown absolutely no difference in autism rates between vaccinated and unvaccinated populations. This month’s federal court ruling that vaccines do not cause autism has publicly confirmed what science has already shown: the autism-vaccination connection is a dead end.
So why are we still worried?
Dr. Paul Offit doesn’t blame parents for looking into a connection. “It’s a reasonable question, ” he told Babble. “Your child was fine. They got a vaccine and now they’re not fine. But that’s a testable hypothesis:And those studies have been done.” In his book Autism’s False Prophets, the esteemed pediatrician gets to the root of the popular belief that vaccines (or ingredients in vaccines, such as the mercury-based preservative Thimerosal) cause autism. Starting with the initial study that sparked the debate (a study that has now, incidentally, been debunked), Offit breaks down the entire history of the controversy, reveals the real motives of the players, and explains how an inaccurate story snowballed through the media until it was essentially accepted as fact. As a scientist and doctor himself (he co-invented the rotavirus vaccine years after watching a child die of rotavirus in his practice), Offit offers an authoritative view on the science of autism and vaccines, and the book offers thoroughly research-backed explanations of parents’ burning questions – i.e., why do some parents who use unproven alternative-medicine “cures” say their autistic children show improvement? And why was mercury used in vaccines in the first place?
Babble called Dr. Offit at his office at the Children’s Hospital of Philadelphia to discuss the truth behind autism “cures,” why internet research isn’t really research, the grave risks of not vaccinating, and the reasons why the author - who is donating all the profits from his book to autism research - still receives death threats from angry parents. (Also check out an excerpt from the book here.) - Gwynne Watkins
Me too. I majored in psychology in college and I thought he was a good guy.
His theory was that autism was caused by moms not loving their children enough. And that was a prevalent theory for quite a while. How do those early theories pave the way for what people still think about autism?
I think that Jenny McCarthy is in some ways an ironic remnant. What Bettelheim basically said was: your autistic child is damaged because of something you, the so-called “refrigerator mother,” did. And what you need is to come to my school – the Orthogenic School in Chicago – and we’ll “thaw them out.” And so he created this notion that autism was fairly easily treatable. What McCarthy offers is what in some ways Bettelheim offered – a cure. She says, “Get off your ass as a mother and stop sitting around and whining about this and do something to help your child.” Give them anti-fungal medicines, give them anti-viral medicines, give them gluten-free or casein-free diets, and your child will be better.
It’s still holding the parent responsible for the child’s condition.
Exactly! What I love about the so-called “neurodiversity movement” as represented by people like Kathleen Seidel is what they say is a “damaged” child is just a different child, and that you have to accept them for that difference, love them for that difference. I really like that.
Let’s say, hypothetically, that we had proof that vaccines did cause autism. What would the evidence look like?
Here’s a good example. In 1976, there was a fear that an outbreak of influenza in Fort Dix, NJ, presaged the next influenza pandemic. The country made forty million doses of influenza vaccine – the so-called “swine flu” vaccine – and distributed them. And the vaccine was then found to be a very rare cause of something called Guillain-Barr’ Syndrome, which is this ascending paralysis in which your legs become weak, your muscles and respiration become weak, you can require incubation and ventilation – it’s a bad syndrome. It was very rare. It occurred in maybe one per 100,000 people who got that vaccine.
It occurred because of the vaccine?
Because of the vaccine. So of the forty million doses that were given, this vaccine caused Guillain-Barr’ Syndrome in maybe four hundred people. It was easily picked up in a retrospective analysis of people who did or did not get that vaccine. Which is to say the only way you can answer these questions is to do a big epidemiological study.
If you think that the MMR vaccine causes autism, then what you do is look at the hundreds of thousands of children who did get the vaccine or didn’t get it and make sure they’re alike in terms of their healthcare seeking behavior, their medical background, their socioeconomic background, so that you can isolate the effect of one variable. So when you do that, if there’s a difference, you’ll find a greater risk of autism. But there have been twelve studies now that haven’t shown that, because it’s not there to be found.
So the way to measure vaccine safety is to look at large populations who’ve received the vaccine. But when you’ve got vaccines like the flu vaccine, which is a different formula every year, how can parents know that the vaccines their children are getting are safe?
Much reassurance should be garnered from prelicensure studies. I mean, vaccines are tested on a level that is greater than anything we do for anything else we put in our bodies. The Rotateq vaccine and the Rotarix vaccine (both for for rotavirus), one was tested in 70,000 children prelicensure, the other was tested in 62,000 children prelicensure. It’s a single Phase III trial, one trial. That’s huge! I’m the head of the therapeutic standards community at The Children’s Hospital of Philadelphia and I would say that of the drugs that are on our formulary, seventy percent of them are not licensed for use in children, but we use them in children.
What are some ways that parents can empower themselves using actual information and not just Googling and getting Jenny McCarthy’s “Generation Rescue” website and believing what she says?
It’s much easier to find people who are like-minded on the internet no matter how ill-founded or ill-conceived their notion is. It’s also very hard to find good information. If you’re the parent of a child with autism and you want to know what is known about the causes of autism, there’s actually a lot. There was a review in the journal Science by Jim Sutcliffe – it was titled “Insights into the Pathogenesis of Autism,” and it was a great article. It listed roughly the thirty genes that have been shown to be involved with autism, it showed what proteins those genes made, where in the brain cell those proteins were located, how they trafficked – it was a great article from July 2008.
But that’s a scientific journal. Are there publications that are accessible to parents of children with autism? Where would I go to avoid misinformation?
What I can say is that as a medical professional, I see those journals that have those kinds of articles in them. The media doesn’t typically pick them up because they’re typically viewed as boring. To talk about proteins like neurexin, neuroligin that sit on the synapse, where one brain cell communicates with another, it requires a level of sophistication and an explanation that I think newspapers consider boring.
I think people also don’t like the idea that they are not smart enough to understand something.
Neurodiversity.com – The website of Kathleen Seidel, founder of the neurodiversity movement.
Unstrange Minds – The website of autism researcher Roy Richard Grinker
Dr. Paul Offit on Jenny McCarthy – Another excerpt from Autism’s False Prophets.
This is going to sound completely politically incorrect – and this is why I get the hate now that I get, and this is never going to come out right, but what the hell – when parents say to me, “I did my research and I’ve decided not to get the chickenpox vaccine,” then they haven’t done their research. What this “research” means typically is that they looked on the internet and read people’s opinions about research. If you want to go to primary research, you should really read the three hundred articles on the chicken pox vaccine safety and effectiveness, look at the scientific studies. And I think it is the rare parent that has a background in pathogenesis or immunology or virology or biology.
The people who do read those three hundred articles are the people with the expertise, who are on advisory bodies like the American Association of Pediatrics – they do go through those studies and they make decisions based on those studies.
On one hand you want to empower parents on healthcare decisions, because if you don’t you’re going to lose them and they’re not going to be the best advocates for their kids’ health. The paternalistic “I know more than you because I’m a doctor” certainly doesn’t fly anymore in the twenty-first century, but I think there’s a difference between paternalism and ceding your expertise.
For example, I was rounding in the hospital and there was a woman who didn’t want to give her children vaccines, specifically the rotavirus – which had just come out – and I’m the co-inventor of that vaccine. I spent twenty-five years working on that vaccine. I think I understand that vaccine better than most people. So I’m trying to explain it to her and she just wouldn’t accept it. She had read something on the internet and that was that.
Some people believe that you’re part of a conspiracy to hide the truth about vaccines from parents. What’s your response to that?
All I can say is that those people spend no time with the people who do work on vaccines. First of all, I’m a parent too – I love the separation of “He’s a scientist” and “She’s a doctor” and “She’s a parent.” I’m a parent. I have young children who are now getting older, sixteen and fourteen, but when I was giving my children vaccines, I was looking into them. What motivates any scientist is one, the love of science, but two, you think you can do something good. God knows it’s not the money; you do science because you think you can contribute. Rotavirus kills two thousand children a day in this world and I think we’re at a state with science now where we have this technology to prevent all sorts of suffering and death. That’s what motivates you.
But you made a lot of money developing the rotavirus vaccine.
A ridiculous amount of money. You have to protect the technology – only a company can make a vaccine. It costs about a billion dollars to make a vaccine, which was more than I or my co-inventor or the hospital had. You have to go to a company to make a medical product. No company’s going to take it unless the technology is protected. So you protect the technology. It then became a medical product, and I made millions of dollars.
So given that you made a lot of money from pharmaceutical companies developing this vaccine, how is this not – to borrow an analogy from the book – a “David and Goliath” thing, where the parents are the little guy fighting a big, money-motivated evil?
They’ve got the players wrong. When I stand up for vaccine science or vaccine safety, I do it because I care about the little guy. Because I care about the child in Minnesota whose parent chooses not to give them a vaccine and then watches the child die from meningitis. Or the parents in San Diego who choose not to give their children the measles vaccine and then watch their children get hospitalized with severe dehydration from measles. There’s a lot of misinformation out there that gets put out in the name of standing up for the little guy but then it does exactly the opposite.
And frankly, as I said, I made millions of dollars – I actually don’t need to work anymore. But I continue to work because I love it.
I’m trying to get at the issue of who profits here. Because it seems like there’s a popular belief that the people behind the vaccines and behind the medicine are making enormous profits, and while that may be true, it seems like the people who have challenged them have, in some sense, more of a monetary stake in the idea.
Well I would argue – first of all, the fact that we were lucky enough to be co-inventors of the vaccines and make a lot of money, it’s like winning the lottery. Believe me, no one goes into science thinking “God, if I can figure out which of these two viral surface proteins invoke a neutralized antibody, I can be rich!” From a company standpoint I think that vaccines have never been big money makers. They’re not something like lipid lowering agents or psychiatric drugs or diabetes drugs that you’re taking every day.
How do you explain the vitriol that you face from parents?
For parents of children with autism, I think it’s a financial and emotional burden. And it’s difficult. I think that some believe that vaccines caused it, and so they give chelation or gluten-free diets or whatever that their child can get better, and it gives them hope. And what I do is say “Look, it’s not vaccines, and therefore all this bio-medical stuff isn’t going to make your child better.” I take away hope.
“We have a very poor understanding of risk.” If I read correctly in your book, the amount of mercury in vaccines has never been shown to have caused harm.
Right, or even caused subtle forms of mercury toxicity, which would actually make some sense. You can argue that mercury can cause mercury poisoning, but it would never make sense that mercury would cause autism, because mercury toxicity does not cause autism.
I remember when I was pregnant and I was reading all these conflicting things about whether I should eat fish. I read an article that came out while I was pregnant that said there had never, ever been a case of mercury poisoning affecting a fetus.
There was this Iraqi disaster, where this grain that had been inadvertently fumigated with mercury and it was made into bread, and those pregnant women showed mercury poisoning in the unborn child. But it was a massive, massive single-source mercury poisoning. That can happen. But no, eating your tuna fish sandwich isn’t going to poison your child.
But everyone wants to tread softly, because no one wants to be the one who says it’s okay if there’s a .01 percent chance that it’s not.
I think we have a very poor understanding of risk.
The single most interesting thing that I took away from your book was the history of placebos in autism treatment. You describe various miracle cures that people claimed worked. And every time one was put to the test with placebo, the parents who gave their children the placebo reported the same improvements.
I think there’s a desperate desire to see your child getting better. And in autism symptoms, which are those of communication, behavior, language and speech, there’s a normal waxing and waning. It’s a fact.
But you wonder about all this anecdotal evidence. It’s persuasive to see people go on Oprah and say, “I did this, and this, and this and my kid showed these signs of improvement.”
Sure it is. I would argue that the term “anecdotal evidence” is a contradiction in terms.
It’s not evidence.
So what’s the danger in parents believing in these alternative therapies and these testimonies that aren’t backed by science?
There was the autism research group in California that claimed chelation worked. Haley claimed this. David Kirby in his book. It’s not hard to get the parental testimonies for anything. You know, “My child was struggling to speak and then I gave him secretin or I gave him gluten-free diets or I gave him chelation and it got better.” Chelation is not a benign therapy. It binds not only to mercury or lead, but to anything with two pluses, like manganese or calcium. A kid in Pittsburgh got chelated and died. And then these things like casein-free diets that can cause you to become vitamin D-deficient, that’s been shown. And so you can have bone thinning.
On the one hand I completely identify with the parents’ desperate desire to see their child get better and that they will do anything that they think might help. I think that’s a tribute to their devotion to their child.
That’s, in part, what upsets me the most about this. Some doctors have been perfectly willing to capitalize on that devotion. Parents have been taking out second mortgages on their house. They get a home hyperbaric oxygen therapy chamber.
“When there’s no clear cure, charlatans will always fill in the void.” Especially for diseases like this where there isn’t a clear cause and cure, I think charlatans will always fill in the void: “Your doctor doesn’t care because your doctor doesn’t know what to do.” “Your doctor wants to do ABA therapy or just behavior modification therapy. Well I can cure him. I’m going to give him this prescription for an antifungal and he’s going to be better.”
That’s your David and Goliath thing. The doctor who cares is the doctor who’s actually willing to stand up for good science and say, “This isn’t going to be easy. It’s going to be expensive, it’s going to be emotionally taxing.” That’s the doctor that really cares.
You do name some positive role models on the internet – parents of children with autism who are advocates for research and a scientific understanding of their children’s condition.
They’re the real heroes, certainly. They’re the ones who, every day, go home to a child who is a challenge to them emotionally and financially and they still want to try and get it right. It’s the much harder route. It’s much easier to think “Look, I’m going to give my child an antifungal therapy and hopefully this will all go away.”
I know a number of people who are afraid to vaccinate their children. I worry about my child going to school with children who aren’t vaccinated.
I’m actually writing another book at some point just about this growing threat of American anti-vaccination. It’s certainly not theoretical anymore. Outbreaks have been going on for about ten years. The measles epidemic last year was bigger than anything we’ve seen this decade, and that cluster of cases in Minnesota where that child died of meningitis because their parent chose not to vaccinate them. I think this is only getting worse.
There was an outbreak of measles in the Netherlands in 1999-2000. It was big, and it involved about four thousand children. What’s interesting is that you were less likely to get measles if you were completely unvaccinated living in a highly vaccinated community than if you were completely vaccinated living in a relatively unvaccinated community. Which is to say that if you’re in a school or an environment where other kids aren’t vaccinated then you’re at risk. No vaccine is 100% effective and if you’re not living in a herd that’s immune, then you’re at risk.