Thanks again for all of your comments. I'll try to address a few of your excellent suggestions and criticisms.
Regarding my characterization of children with autism: I think one of my limitations in writing this book is that I'm not a neurologist, psychologist, or developmentalist. I'm an infectious diseases specialist with an expertise in vaccines. So I don't come in contact with many children with autism. As a consequence, my characterization of children with autism in AUTISM'S FALSE PROPHETS came exclusively from what I read in newspapers, which no doubt slants descriptions to more extreme symptoms, or to descriptions from a handful of people, like Richard Grinker, Peter Hotez, Kathleen Seidel, and Camille Clark. I think that the limited number of descriptions of children with autism failed to include children on the milder end of the spectrum.
Regarding my comment that vaccine introduction into developing countries decreases family size: The commenter is correct in assuming that families get smaller because parents decide to have fewer children, realizing that not as many will die from infections.
Regarding the culture of celebrity: I was speaking at a statewide immunization conference in St. Louis last week and a physician asked what I thought about Amanda Peet's entry into the debate about the importance of vaccines. My sense is that in a more perfect world the media would look to clinicians, public health officials, and scientists for information about science and medicine. But we don't live in that world. It's not only that entertainment television hosts like Oprah Winfrey and Larry King seek out people like Jenny McCarthy for healthcare advice, Sanjay Gupta on CNN does the same thing, recently interviewing Aidan Quinn and Matthew McConaughey on their concerns about the safety of vaccines. So, I think Amanda Peet represents an important counterpoint to actors like McCarthy who unnecessarily scare the public about vaccines. And, given the amount of hate mail that Ms. Peet has received, I think it's very brave of her to do it. She defends vaccines simply because she thinks it's the right thing to do, without any apparent direct benefit to her or her career.
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I also think it's unfortunate that people keep talking about the vaccine-autism issue as a debate: There is, obviously, dissension about the views that are held, but I'm always astounded that so many think that the evidence of scientific studies is "debatable."
I also think the media and some "autism advocacy"---really antivaccinationist groups---keep describing the issue as "scientists, doctors, and medical professional vs. parents." It's scientists, doctors, medical professionals, and parents "vs." parents, alternative health professionals, and others. As a parent, I've been constantly frustrated that the media suggests that all parents of autistic children all agree about mercury poisoning etc. as the cause of autism (not, of course, the 4 parents that you described in your book---Clark, Grinker, Hotez, Seidel).
dr. offit, i really enjoyed your book. i appreciated how well researched it was and the extensive notes. great job!
a question: i noticed that you held very strictly to the scope of the book, and that made me wonder if there was anything you would have liked to include but didn't due to lack of space or because it lay outside of the book's scope.
What I am not at all understanding about anti-vaxxers is why they need vaccines to be The Cause of autism? Why not look for other reasons? Money that continues to study if there is a vaccine-autism link is money going down the drain. Autism seems to be an enormously complex thing, and the more resources studying it, the better we can understand and work with it. Why is a genetic component such a bad thing? We all pass weird genes on to our kids (and weird genes can just suddenly appear), and we probably pass on even more weirdness in our parenting idiosyncracies.
Also, the pharma shill gambit is continually invoked, and yet these same people seem to have no problem with quacks who will chelate their child regularly (milking the cash cow) and those who will sell them any number of supplements at a nice profit. These are people who are directly financially benefiting from desperate parents, and yet the anti-vaxxers seem to have no words of scorn for them.
I just don't get it.
Diane,
The vaccine court is easier to win in than a civil court, also as Kathleen Seidel has aptly shown, they don't even need to have a legitimate case at all in order to be paid gajillions of bucks to go through the motions of just pretending like they think the kid was damaged by vaccines.
That's one reason why it's the all vaccine show all the time. The other reason is that antivaxers are flaming insane and they hang on to these litigant parents like ramoras on a shark. They'll do anything to bash vaccines. They'll pin anything and everything on vaccines. Occam's duct tape. Every ill that has ever happened to anyone, anywhere is because of vaccines (or the Illuminati... but they are behind vaccines, anyway.) So aside from the litigant parents (some of whom are lying through their teeth about what happened to their kid) there's the hangers-on antivaxers who don't have any tie to autism, but who jump in and bash vaccines and big pharma at every opportunity.
If you try to discuss autism and genes, if they can, they'll jump in and run it right back to a discussion blaming vaccines. Occam's duct tape.
To add a little more to why they aren't interested in anything but vaccines, it has amazed me that there has been very little interest in any "toxin" that doesn't come from a company that has a lot of money. So that if it turned out that dime-store lunch boxes from China were the cause of autism, and that the importer and sellers of the lunchboxes didn't have any extra cash or stuff to sue for, then there might be a lot of anger over lunchboxes, but not a lot of media coverage, because there wouldn't be any big evil and wealthy company to go after, and no reason to prime all the future jury members into believing that an evil corporation made their babies autistic.
Also, when there was some (weak) evidence that maybe it's pesticides or miticides (mitacides?) that could cause autism there was mostly a big fat yawn from the "environmental cause of autism" screamers. Why? Because their lawyers have been putting money out on building a (fake) case against vaccines. To go after pesticides now is to throw that all away (unless you can prove there is thimerosal or measles vaccine virus in bug spray) and start all over (and face the stiffer requirements of civil court).
I think that it all comes down to guilt. There is a tremendous amount of guilt that parents feel when a child is diagnosed. And there are 2 directions that it can be directed. If the "cause" is purely genetic then the parent feels guilt that their "faulty" genes have resulted in the child's condition but there is nothing that can be done to assuage this guilt. If the cause is vaccines, or toxins, or something else, then the parent can ease their guilt by blaming someone else.
Of course, there is a 3rd way to deal with it, which is to accept that it is part of life and celebrate the individual and encourage his or her uniqueness and gifts, as they are.
I understand the guilt. Parental guilt is ubiquitous. But Ms. Clark, I don't think your average anti-vaxxer is thinking about vaccine court vs. civil court. AoA almost surely is, but probably not most (?) antis. It's too esoteric, don't you think?
I definitely think that a general fear & loathing of Big Pharma is at work. And probably a tendency towards conspiracy theories.
But it's still puzzling to me that, given the strong consensus that vaccines don't cause autism, these people want to keep shunning vaccines at the expense of less research into the mechanisms of autism.
Or even mercury in the environment. They use that as a talking point, but they keep the spotlight entirely on vaccines. Clearly, the focus is to get that money at all costs. Actual causation is secondary.
I think it has to do with financial security. As the parent of an autistic child, I think about the future, and I can sort of see where they are coming from.
In my opinion, the reason vaccines keep having the spotlight placed on them is because parents are looking for a simple explanation which meets the following criteria:
1. Parents are not in any way to blame.
2. The explanation has to apply to all cases of autism, with rare exceptions.
3. The explanation has to offer a path to a cure.
Parents are naturally guilt-laden at the time of diagnosis. Everyone asks themselves - "Is it something I did?" Seizing the vaccine explanation offers the opportunity to pass that guilt on to the medical establishment. And this also is consistent with why there is so much resistance to genetic explanations for autism - it smacks of "blame the parents.".
Joseph and Ms. Clark wonder why pesticides, mercury in the environment, etc. don't receive more attention. That's because everyone can see that they couldn't be the only explanation - parents and children in different geographic areas are exposed to different doses of these things. There's a natural objective of finding the one, simple explanation. Vaccines are given to almost everyone, and provide that explanation. Only in rare cases are the anti-vaxers forced to move to other environmental explanations. "Your child is autistic, and never vaccinated? Well then, it must have been the mercury in your fillings, the environmental mercury, and don't forget all those other toxins out there!"
If autism was caused by vaccination, the hope of a cure follows. Just de-tox, chelate, etc., and your problems will be solved! And if by chance it wasn't the vaccines, you need de-toxing anyway.
Dr. Offit,
I have a question about the book cover. What was the reason to illustrate the torso of a baby? I'm guessing that it was to indicate the vulnerability of children to the False Profits, but maybe there is another reason?
I tried to post this a bit ago, but it appears to be lost in the ether. If it double posts at some point, my bad.
In addition to the other things that have been mentioned (guilt, a desire for a cure, and so on), there seems to me to be an entitled streak in at least some of the mercury parents. Other science-based autism bloggers have discussed this, I'm just adding my two cents.
A subset of the mercury militia talks about their children being stolen from them - they had a perfect child and now they don't. There seems to be a sense that they deserve their definition of a perfect child.
The obsessive vitamin and quack treatment schedules that have been posted on some of the other bookclub threads remind me of the stereotypical helicopter parent overscheduling their child with dance class, soccer, tutoring, yearbook, and whatnot, to ensure they get into a good high school, so they get into a good college, so they become a "success" and validate the parents. Similarly, the antivax parents overschedule their children with vitamins and supplements and treatments, so the kids will become a success and validate the parents.
Blaming vaccines allows them to feel angry at a specific entity for "stealing their perfect child" and never move past anger and the hope that they can cure their kid. They don't have to adjust their expectations of what their child may or ma not do with their life. They don't have to live with the uncertainty of how autistic their child will be as an adult. They don't have to mourn the life they thought they were going to lead.
Thank you for your comments. I also really liked the " Myth, Religion, and Jenny McCarthy, False Prophet of Autism " post. Even though AFP talks about the religious-like aspect of anti-vaxxers, I hadn't really absorbed that. I think there's a part of me that will always be a little puzzled by the anti-vaccine hysteria, but I also think I'm a bit closer to understanding,
thanks..
Well yeah the scientific studies are debatable when the conclusions to the studies done are invalid.
Case in point: The NRC refuses to do further research into the connection between vaccinations and autism after the NRC in 2004. That 2004 study was based on the MMR shot with two groups: children who had received the shot and those who had not. There was no significant difference in the amount of autism between the groups. Nevermind that each of those children likely got the hepatitis shot before they ever left the hospital after being born (unless they were Amish or something).
The NCR's extrapolation of that research into the conclusion that there's no connection between vaccinations and autism is absurdly invalid. It's not the MMR shot -- it's the hepatitis shot babies get before they ever leave the hospital that causes autism.
The NCR's conclusion to their research is as aburd as if they had studied lab rats and observed "they don't chase cars" and concluded "Based on our study, there's no connection that any animals actually chase cars" (And in reality we all know some dogs chase cars)
The "need" for vaccinations to be the cause ??? I think most of us know that any good doctor takes a parent's gut reaction (for lack of better words) into consideration. Doctors are trained to make that a part of their professional practice. When in history have so many parents grasped onto suspecting the same cause and been wrong? (And notice the parents who no longer think vaccinations caused their child's autism, once upon a time did have teh gut reaction that vaccinations were exactly the cause. It really isn't that hard to psychologically browbeat
Also, let's not dismiss the obvious:
Vaccinations contain neurotoxins -- by very definition of that word it means the stuff can poison the brain and cause brain damage. It's just absurd to not recoginize the implications of neurotoxins causing autism, and also absurd not to recognize when a study has been improperly done to find that connection.
âAll Truth passes through three stages: First it is ridiculed; Second
it is violently opposed; Third it is accepted as being self evident."
â Arthur Schopenhauer (1830)
Well yeah the scientific studies are debatable when the conclusions to the studies done are invalid.
Case in point: The NRC refuses to do further research into the connection between vaccinations and autism after the NRC in 2004. That 2004 study was based on the MMR shot with two groups: children who had received the shot and those who had not. There was no significant difference in the amount of autism between the groups. Nevermind that each of those children likely got the hepatitis shot before they ever left the hospital after being born (unless they were Amish or something).
The NCR's extrapolation of that research into the conclusion that there's no connection between vaccinations and autism is absurdly invalid. It's not the MMR shot -- it's the hepatitis shot babies get before they ever leave the hospital that causes autism.
The NCR's conclusion to their research is as aburd as if they had studied lab rats and observed "they don't chase cars" and concluded "Based on our study, there's no connection that any animals actually chase cars" (And in reality we all know some dogs chase cars)
The "need" for vaccinations to be the cause ??? I think most of us know that any good doctor takes a parent's gut reaction (for lack of better words) into consideration. Doctors are trained to make that a part of their professional practice. When in history have so many parents grasped onto suspecting the same cause and been wrong? (And notice the parents who no longer think vaccinations caused their child's autism, once upon a time did have the gut reaction that vaccinations were exactly the cause. It really isn't that hard to psychologically and emotionally browbeat a parent into thinking their gut reaction is wrong -- when you feel the whole world against you it's actually probably healthiest for one psychologically and emotionally to give in -- an elaborately cruel form of behavioral conditioning)
Parents picking vaccinations as a cause so they as parents are not to be blamed for it ??? Actually I AM to blame for my chioice to vaccinate my children. I KNEW there was a risk for autism because there are NEUROTOXINS in shots. But I understood those risks to be so low that when damages are done, our government can afford to compensate for damages. Not that I wanted damage to my children! I just thought the risk of being harmed by deadly disease for outweighed the risk of being damaged by a vaccination. I was wrong, and I am to blame. And the risk of being damaged by a vaccination with neurotoxins in it within a country where the vaccination companies or government (we the people) don't take proper responsibilities for the damages -- FAR outweighs the risk of being seriously harmed by an infectious disease a vaccination can prevent.
âAll Truth passes through three stages: First it is ridiculed; Second
it is violently opposed; Third it is accepted as being self evident."
â Arthur Schopenhauer (1830)