Yesterday, results of a survey on beliefs about vaccines circulated on the internet. The survey conducted last week, asked over 2000 adults if they believed vaccines, or the MMR shot, caused autism. I’m not an expert on surveys and I don’t know how reproducible these results are to all parents in the US. But the news caught my eye (along with many others) when they reported: “Just a slim majority of Americans — 52 percent — think vaccines don’t cause autism” That’s a kind-of-odd-double-negative-type way to look at it, I suppose. Or maybe a hopeful one. The results reflect that nearly half of adults in America may suspect or worry that vaccines cause autism; 18% saying they believe a connection exists.
Whew.
The survey reminds us of some of the Why. It seems on some level, it’s a breakdown in our education. While only “69 percent of respondents said they had heard about the autism-vaccination theory — only half (47 percent) knew that the original Lancet study [that linked vaccines and autism] had been retracted, and that some of that research is now alleged to be fraudulent.” And, the details of all the research finding no link between autism and MMR is even more deeply buried, I suspect.
Even so, the numbers surprised me. In light of all the writing in the British Medical Journal this month on the scam behind Andrew Wakefield’s original paper in 1998 making the claim, I’ve been thinking about where we all stand in our understanding of immunizations, science, and trust. More on that next week. But I really wouldn’t have said 1/2 of my patient’s parents believed or suspected in a connection between autism and vaccines. What percentage would you have guessed?
Ultimately, the point for me is that there is a lot more suffering going on than I previously thought. An extra wince from mom and dad when the needle goes in. I mean, while the far majority (90%) of US children are fully vaccinated, there’s a huge percentage of parents who have serious concerns about immunizations. It’s dreadful to think that if this study reflects the group of parents that bring their children to see me, nearly 1/5 to 1/4 to 1/3 of my patients’ parents may feel we are increasing odds of autism when we vaccinate. On some level that thought is excruciating for me. Housing that kind of fear is an awful way to parent or to experience decisions around immunization. I want families to have insight, good evidence, data, yes. Along with time to question and explore, yes. I want them to understand that all interventions, from antibiotics to vaccines to surgery, have risk. And benefit, too. We all want the opportunity for an open understanding of the risks and benefits of vaccines, just like anything else we do in medicine. I really don’t want immunizations to feel like a leap of faith.
Unfortunately, so much about what we have heard about vaccines may be myth.
Yet, I know that fear around immunizations didn’t start with Andrew Wakefield. It started long ago. A nice opinion piece in the New York Times yesterday summarizes it well. Just like how chemotherapy feels barbaric (injecting toxins), vaccines can and have felt very awkward for families for a long time. The success of vaccines clouds our understanding of their effectiveness in saving lives. Most of us just don’t know what Measles or Diptheria looks and feels like. We have no experience. And in we, I mean both doctors and parents. Those who remember the feelings and experiences of patients and family members with vaccine-preventable illnesses are rare. Although, as we have all heard, the stories are returning about recent outbreaks in the US of both Measles and Pertussis. Most public health officials blame dwindling herd immunity secondary to the decreasing vaccination rates of children.
The New York Times Op-Ed ends with this thought:
Obstetricians, midwives and pediatricians should present the facts about vaccines and the nasty diseases they prevent early and often to expectant parents. Health agencies should mobilize local parents’ organizations to publicize, in realistic terms, the hazards that unvaccinated children can pose to everyone else in their communities. And health officials must redouble their efforts to harness the power of the Internet and spread the good word about vaccines.
I don’t know that telling fearful stories is the proper tactic to calm families or help them trust immunizations. Because really, this is an issue of a growing lack of trust. But I certainly (duh) believe we need to use the power of the Internet to spread the good word about vaccines.
Sharing horrifying stories about children dying from these diseases doesn’t feel like the right approach to me. And you? Would it help you, as a parent, to hear about the suffering of those children with measles, or the loss of life from these illnesses like influenza or complications of Varicella (chicken pox), or deafening meningitis, and the families who grieve? Although many believe it’s the right approach, I remain hesitant. I like to talk facts and ultimately I like telling stories. And I certainly don’t know I have a more perfect approach for now. I do share stories and statistics about vaccine-preventable illness in clinic every single day. But often I feel like these stories increase the tension and anxiety between parents and myself.
Please tell me what you think. Do you want to hear about details of illnesses these vaccines prevent from your pediatrician? Do you want to hear about the suffering and sequela? Does it help you? Do you think that real stories of disease illuminate the rationale for vaccinating? Do you feel/believe that hearing stories increases tension? Do facts about children and adults suffering and dying from preventable diseases increase your confidence in vaccines?
And one last thing, do you believe that vaccines cause autism?
Christine from Shot of Prevention says
Ironically, I just posted a very similar piece today after reading both of the articles you mention (the survey & the NYTimes piece), and I appreciate your perspective as a pediatrician. It is a frightening thought that so many parents are simply taking a “leap of faith” as you mention. I can only speak from my experience as a parent when I answer your questions…yes, yes to all, with the exception of the last question – no.
For me personally, I believe a candid discussion with my pediatrician at a well visit would have gone a long way in establishing trust. First, acknowledge that the diseases we vaccinate against do still exist and result in hospitalization and death (for instance, many parents just don’t consider chickenpox to be harmful because most parents were not vaccinated themselves and contracted the disease with no complications). Having met families who have lost their children to preventable diseases, I feel their stories can be communicated in a way that is not intended to be alarming, but illustrates that the risks are still present. Secondly, I feel it’s important to not only educate parents about the diseases, but about the basic science that enables vaccines to offer immunity. This would include acknowledging the potential risks and limitations of vaccines, while also highlighting their successes and enornous benefits. If parents haven’t done the research, they will be comforted in hearing this info straight from their doctor. I know many parents look at their infant children and worry about the number of immunizations they receive. Perhaps with a better understanding of their infants’ ability to produce immune responses and the role of the antigens in the vaccines, that many parents would shift from a concern that vaccines are toxic, to the fact that vaccine help offer better long-term health for the community as a whole. I only wish more doctors could find the time to make these conversations a priority.
molly says
great post on this! i’ve been dialoguing with a few friends about this as of late. i do NOT believe vaccinations cause autism. but i also don’t believe “scaring” parents into vaccinating their kids by sharing horrific stories is the answer either. there has to be a turnaround in the educating of parents. facts, simply put. unfortunately, it’s tough to reverse thinking after being misinformed. it’ll take a long time to undo what was done in 1 (fraudulent) study! why is it that it seems some parents are more likely to believe incorrect information than fact? i find that there’s almost an “egotistical air” about some moms who choose not to vaccinate, as if they are just wanting to be different and not….mainstream. it’s those women that cause me to think, “good luck ever changing THEIR minds!” i just want what’s best for my family and my children. it’s not about personal preference. it’s about facts and safety. *steps off soap box* 🙂
Julia says
I think I posted this here but it may have been on another blog. But I will repeat the story just in case: I was on the fence about vaccinating my doctor for chicken pox because my experience is that if you catch it as a child chances are it will be completely benign. But then our nurse said to me, “It would be benign for your healthy child, but chicken pox is contagious before the symptoms show up. What is she is at the park or the zoo and gives it to a child with leukemia or a compromised immune system who can’t have vaccines? Your child will get well and you’ll think nothing of it, but another mother’s child will die because your child was not vaccinated.”
That isn’t verbatim what she said but that is exactly the sentiment. And it didn’t even take me a second to say, “Definitely – we want the vaccination!”
I have told that story to some neighborhood mothers who refuse to vaccinate their children and their response is, “I’m not responsible for their child – I need to protect my own!” which goes to show how deep that fear of vaccines runs that a mother would callously choose negligence that could cause another mother to lose her child over getting a vaccine for their own child.
Jessie says
I have to admit I was one of those parents who vaccinated my daughter but still remained nervous about whether or not there was a connection with Autism. We talked to our pediatrican about our concerns and he reassured us, but I still had fear in the back of my mind. But honestly, as a parent, I think the fear stems from so much uncertainty about Autism. You hear stories about a perfectly “normal” child waking up one day and being completely changed… any parent wants to do whatever is possible to keep their child safe. It’s a constant tug-of-war between head and heart. But in truth, I think what would help parents most is to better understand Autism. I know there are still SO many questions about what, how, why Autism happens, but maybe instead of instilling fear about these diseases, doctors could focus on the whats, hows, and whys about Autism – that knowledge would help parents SO much and might change the survey results next time around…
Christina @sparkly_horse says
I don’t believe vaccines cause autism but I understand the fear that makes some parents question it. There have been many instances over the years where Doctors have believed one thing and it turned out to be incorrect. I was pit on Accutane as a teenager. My doctor is great and truly believed that it was safe. It has now been pulled from the market because of it’s link to Gastrointestin
Christina @sparkly_horse says
Oops pressed send by accident… Continued…gastrointestinal diseases. That being said, I still trust doctors over the Internet and I don’t believe there is a link with immunizations and autism.
It really helped me when my doctor talked about disease and what it looks like. We just don’t see it here so it’s hard to wrap your brain around it. The thing that really got me is when she told me that immigrants who come from Countries where these diseases are a problem will come and line their kids up, hold out their arms and ask for every shot available, without question. They have seen the face of disease and would never even consider subjecting their children to that. That hit home for me. I could barely handle it when my 7 month old got a 99 degree fever. I would be no match for rubella or small pox.
Chris says
Risks and odds are tough things to wrap my head around when it comes to my child. Whether it’s vaccines or any other aspect of my kiddo’s health, I do trust my pediatrician to inform me as completely as she’s able to — then make a decision. We decided to vaccinate. If I didn’t trust her, I’d find a different doctor. That may sound like a cop out, but I don’t think so. Relationships are important. And besides, she went to medical school, not me. I trust her training more than my fears.
Tk says
Thanks for saying that…Jenny McCarthy did not do to medical school!
Michelle says
I’m on the fence about vaccinating my child. I don’t know if there is a connection between autism and vaccines but I don’t know there is not. But that’s not the only or main reason why I have chosen not to thus far. I am fearful about hearing the numerous personal experiences from parents like seizures, brain damage, huge personality changes…. etc..
One of my biggest concerns is WHY?? so many for such a tiny person. I am not a scientist nor doctor but just some logical common sense thinking about 35+ injections of multiple chemicals, virus’ just DOESN”T sound good for you. When I was a child I got around 11 so why has it has tripled in just 1 generation. And WHY?? vaccinate a newborn against a sexually transmitted disease?? To ease some of my fears I was considering a delayed vax schedule waiting till my son was older and spreading them out 1 (2 at tops per visit)…but my ped has informed me that so many of the shots come in multi dose and cannot be ordered separately any longer.
I’m still not sure what my final decision will be but I believe that it is MY (and husbands) decision. We are responsible for our child, his health, safety, education, so on…..pressuring me, calling me a irresponsible parent, telling me horror stories about other children dying doesn’t help me. For every horror story you can come up with to “force” me to vax my child, a parent has a horror story of why I should not. I just want the facts (period) and the freedom to make my own decision.
I may be taken a great risk my choosing not to vax my child…if he catches polo and dies that responsibility lays on ME, I understand that and accept that. but if I cave to the pressure and vax my child when I don’t feel secure in that decision and he is injured by those shots I wouldn’t forgive all those who ‘forced’ me nor myself for going against what currently is basically just my strong motherly instincts. So far my son is healthy and growing. He seems much healthier than a couple friends’ children who are Vax’d. He has had chicken pox and the flu and a few mysterious “virus’s” and he is just fine in a couple days. I keep him pretty much at home and I tell parents of the children he is around that for now I have chosen not to vaccinate him. I am just trying to do the best I can for what is best for my child, which is all any parent can do.
Monika says
I truly do NOT believe vaccines cause autism.
But that extra wince you mention… I have to admit, it was still there when my daughter got her MMR vaccine. There was this nagging, teeny-tiny, “what if all those activists are right?” thought that entered my head. It bothered me that all the junk science I’d read online affected me like that at all.
Meagan says
@Michelle I may be wrong, but I would say that if he got over it in a day or two, your son didn’t really have the flu, he had a bad cold.
It’s not about horror stories. I think most doctors agknowldge that some people can have negative reactions to vaccines like some of the ones you mentioned, the reactions are just extremely rare. On the other hand, if we allow these diseases to come back, as whooping cough is in areas of California, and Measles has in the UK, and in Denmark (I think?) death by those diseases will NOT be rare. And herd immunity IS important. When your son gets the flu vaccine, he is helping to protect me, and other people with asthma, in case our vaccines fail. When he gets the Tdap he’s protecting my currently unborn baby for the first few months of his life, until he’s old enough to get the vax himself. And obviously he is protecting all those immuno-repressed people who can’t get vaccinations, and the people who can’t get vaccinations due to the exact bad reactions you worry about. He is ALSO absolutely getting the best protection available from diseases that are also completely capable of killing even a healthy child. Like the recent 3 year old girl in England.
BTW… Your child isn’t healthy because you’ve avoided vaccinations… He’s healthy because he and you are very lucky.
Doctor Karen says
I agree that fear of autism is rampant and plays a huge role. I am a doctor and even I didn’t know a whole lot about it until my son was diagnosed. I was well versed on the basic science behind vaccinations and the research on a potential autism-vaccine link, and I came to the autism table with an understanding that the scientific community does not believe vaccines cause autism. My son never regressed after a vaccine and the signs of autism in him date back to his infancy. They were subtle, and even though his father and I are both physicians, we did not think there was a problem back then. I do not believe that vaccines caused my son’s autism. I believe my son was genetically predisposed and some combination of environmental exposures impacted his development. This could have even happened in utero. I wonder about those parents who insist that their child drastically changed after a vaccine. I don’t think so publicly discounting those people makes anyone trust medical professionals any more. Haven’t we all had an experience when we felt like we knew our child better than a doctor and just knew something was wrong?
I do believe educating people about what illnesses vaccinations prevent is important. We assume people know that hepatitis B can cause liver disease and liver failure and isn’t just an STD. We assume people know that mumps can cause sterility. We assume people know that polio can cause paralysis, respiratory failure, and death. We assume people know that small children are far more vulnerable to these illnesses than adults. But people don’t often know. It’s our job to teach them.
HereWeGoAJen says
My daughter has had all her vaccinations. She got her first illness after she turned two. (She had Influenza B, confirmed by her doctor, and was only sick for two days, because thank goodness, we had gotten her the flu vaccination and she already had some immunity built up.) Saying that your child has never been sick because they haven’t been vaccinated doesn’t make sense. It’s correlation, not causation. I can show an extremely healthy child who has been fully vaccinated. And when I say first illness, I mean that she never had a cold, never had a runny nose, never had a stomach virus until after she was two. She had her first vaccination when she was three days old.
I am a strong believer in vaccinations. I lived in Indonesia where vaccinations were not widely available and I saw people crawling through the streets begging because they couldn’t walk from polio. Yes, there are side effects from vaccinations, but they are thankfully rare and the diseases we are being protected from can be so much worse.
When I posted on my blog about vaccinations, someone else pointed out that they didn’t vaccinate their children against diseases that were transmitted primarily by lifestyle choices. Another one of my readers pointed out that she knew a child who was bitten by a child infected by one of these “lifestyle choices” diseases. There are always methods of transmission that you don’t see coming and you can’t avoid. So, yes, my infant is not at risk for sexually transmitted diseases, but that doesn’t mean she isn’t coming into contact with someone who is.
Also, my aunt is currently in treatment for cancer. If your healthy child for whom chicken pox will not be a problem gives it to her, she will likely die.
Since vaccines have been around for so long and are given to the majority of people, I honestly feel very safe giving them to my child because they have been tested so much. Before my daughter has gotten a shot, it has been given to probably millions of other children and adults and there have been very few side effects.
Alicia says
I will enter a PA (physician assistant) program this summer. This discussion has been illuminating. It’s amazing to me how many people choose not to vaccinate. I want to find a way to understand that point of view once I am in the role of a primary care provider. It’s so difficult to be sympathetic however. Taking immunology really helped me understand the mechanism of vaccines .. I wish everyone could take a mini-immunology class. I vaccinated both of my children on-schedule.
I wonder if you saw this interview with Jenny McCarthy on ‘Autisms and Vaccines”
https://www.time.com/time/health/article/0,8599,1888718,00.html
An excerpt:
If you ask a parent of an autistic child if they want the measles or the autism, we will stand in line for the f___ing measles.
Really? Even if this means your child dies? Really?
Clearly, I have a long way to go .. but I appreciate health care providers who respect the boundaries and beliefs of their patients so I will strive to be that way as well. But, wow, this is a tough one.
Viki says
How many people believe in UFOs. People believe all sorts of crap based on no evidence. I think you are generous to think that more than 50% of the country would agree on anything. 🙂 in any case, I think a teeny tiny % of kids have adverse effects that put them on the spectrum. I also don’t doubt that they might have got there from another trigger. A close family member has permanent neuropathy in his spinal cord from the H1N1 vax. His kids still get their flu shots because he believes the research that says he was prone but it’s not hereditary. Other family members who aren’t as genetically close are permanently scared off the flu shot. How’s that for irony?! You can’t talk some people out of fear with logic and evidence once they’ve witnessed the improbable.
bigmamj says
I do not believe vaccines cause Autism. However, for me, a nurse who has seen pts suffer in the PICU from preventable diseases, vaccines are a sure thing for my kids–I was scared!
Sally says
Hi –
Thought some parents would like to listen to the live chat by CDC on concussion Thursday.
https://www.facebook.com/event.php?eid=195320380484640
Sandy says
I think we do need a little more scare tactic. I spend some time on an internet community for mothers. There are support groups for mothers who choose not to vaccinate. Typical arguments against vaccination are “Those diseases aren’t that bad”. I’m not an MD, I have no really interaction with them, but they need to know that these are indeed very serious diseases.
Susan says
I know that the study was defective and fraudulent, that the other authors retracted their support for it several years ago, a fair amount about when and how autism emerges relative to the vaccination schedule, etc. I don’t think that autism is causes by vaccines. I get the herd immunity concept. I’m all vaccinated (including DTAP and flu vaccines for the last several years), and so is my 17 month old.
HOWEVER, even though I am with the program on vaccines, I feel very conflicted and uneducated about “giving in” and letting my doctor vaccinate my toddler against varicella. I’d read somewhere that there was an increased incidence of teenagers with shingles these days (caused by the vaccine?) — when I asked, I just got a hairy eyeball in response. I am so, so skeptical of the merits of the chicken pox vaccine. (Maybe just because I didn’t have it myself?) I thought chicken pox was just a nuisance, not a deadly/disfiguring disease? I would also really have to think about the HPV vaccine if I had a teenage daughter — that one always seemed rushed to market and questionable to me. So while I don’t buy into the vaccine-autism connection, I can relate utterly to feeling that wince or tension. I think you’re right, btw, that horror stories aren’t the way to go.
Sunshine says
My son completely regressed within days of his 15 month immunizations. My mother in law, who is a pretty sensible woman, spoke of a horrible reaction my husband had to the pertussis shot in the 80s, and was really nervous about my son’s shots.
I don’t think vaccines cause autism. Regression is real, however, and has been documented- there are plenty of videos on youtube of happy, engaged, talking kiddos who later seem to slip into their own world. My heart breaks for scared parents who went through what I did (a regression right after an immunization) but who don’t have enough education and are now a little rattled to use some critical thinking, who get stuck in the Why. I was there, but just for a very short time, and for that I am grateful.
My son also attends center based therapy where many parents have certain beliefs about vaccine injury, and it seems like everybody is always sick- especially the youngest, my baby. Today was the first day I’ve seen him smile in all of February, as he’s feeling OK.
You know, but I don’t have a lot of info on the old DTP vaccine. I’ve read hundreds of anecdotes about people being harmed by DTP, my own husband has a long, documented medical history pointing to serious neurological symptoms triggered by the DTP, and I know there is now a different shot (DtaP??) – but I have also read that a lot of experts suggest DTP was never responsible for any injuries at all. Is there any science either way? I can’t find any studies.
J J W says
I am a strong believer that not only do vaccines have an important role to play in causing autism, but also contribute to allergies, asmthma, adhd and other auto-immune disease.
There is an enormous amount of evidence that explains how and why. Just think: when you inject chemicals into your body to play with your immune system, they do!
Two of my kids had nasty reactions to their vaccines and we are still dealing with the consequences two and half years into biomedical treatment (which has helped immensely).
As to “herd immunity”: I know two people who had a flu shot. The first one had a miscarriage two weeks later, the second one spent ten days in bed with a severe case of bronchitis immediately after his shot. Anecdotal? Maybe. Probably not. Injecting yourself with known neurotoxins and immune suppressants such as mercury and aluminum as a very bad idea.
Mette says
Dear Mama Doc. I am the co-organizer of a Science Cafe on Bainbridge Island. We would like to invite a speaker that can give a talk on vaccine myths. It needs to be someone that is well versed in all the anti-vaccine arguments and can address them compassionately and effectively. Two of our elementary schools had a 20% vaccine exemption rate for last year’s kindergarten class. I find the numbers extremely worrisome and hope we can do our part to educate. Do you know of someone that may be interested?
Wendy Sue Swanson, MD says
Hi Mette,
There are lots of pediatricians who can talk about this—it’s finding time that is the most difficult part! Have you talked with your child’s pediatrician? Would a local pediatrician be most helpful because of reputation, etc? If you’re looking for a national-level vaccinologist/pediatrician speaker it may be more difficult. But the numbers you state and the beautiful location may be a great draw 🙂
Mette says
Good idea. Will try that. Thanks!
Anne says
I believe my son was genetically predisposed and some combination of environmental exposures impacted his development
And you don’t think vaxes could be one of those environmental exposures??? Really???
Wendy Sue Swanson, MD says
Hi Anne,
I don’t know exactly what you mean that your child was genetically predisposed. Predisposed for what? Are you talking about developmental delay or concerns about autism? Do I think vaccines are an environmental concern? That’s a good question. They, like anything we eat, ingest, absorb, inhale or touch comes into our bodies. So yes, on some level, of course immunizations are a part of our environment. But please clarify your question and I’ll do my best to respond.