August 16, 2011

Autism, Vaccines, and Parental Advice

I am on a number of mailing lists for parents of special needs kids. Recently, the following question was posed on two of these lists. (I cleaned the language up a bit, since I think the author probably isn't a native English speaker).
Hi, I am kind of confused with wich vaccines to avoid for my 18 year old baby. I know one is the MMR but what about the DPT, flus shots, HIB, and Hepatitis? I have a 3-year-old diagnosed with autism that have all his vaccinations up to date and I don't feel comfortable doing the same thing with my younger baby that is presenting a mild speech delay already. Also, I am concerned if I don't vaccinate my son, what kind of precautions should I take so they don't get sick? 
Questions like this break my heart. This mom is clearly scared, but also so confused by the mass of information and misinformation out there about the autism-vaccine connection.

I was the first to respond. I usually do respond to these. I make my point known then stop because it is too aggravating to debate in this kind of forum. Here was my response:

This is a tricky question, and you'll get different answers from different people. It is a debate that, sadly, divides the autism community. My perspective is that you should not skip any vaccinations. There is no scientific evidence of an autism-vaccine link. There is, however, a link between increasing rates of diseases like whooping cough and measles because of reduced rates of vaccination. If you choose not to vaccinate your child, you are putting your child, and other children, at risk for those diseases.

This sparked some lively debate, which was, for the most part respectful and completely unhelpful since she got all of the possible answers, from "don't skip any" to "delay some" to "skip them all." There were, however, a few responses I want to address.

No flu shots here either.....My NT [neurotypical] daughter at the age of 8 got H1N1 and I didn't even know it was the flu. She had a slight fever and bad cough...but, went to school (oops) for 2 days before I thought she was sick enough to go to the Dr. Got tested and it was positive! I felt bad...but, no one else got it (her best friend, her twin brother with autism, the rest of the family, etc). That proved to me that the FLU shots were certainly not needed. 

To which I responded:
It's great that your daughter had a mild case of the H1N1 flu. Indeed, for many, it turned out to be quite a mild strain. Unfortunately, some people did die from the H1N1 flu (and other flu strains every year). One family's experience (positive, negative, or neutral) does not prove anything about how another will react. 
I want to respectfully put forth another opinion. I am a firm believer, especially with things like whooping cough, measles and other potentially deadly childhood illnesses, that we have a public health responsibility to vaccinate our children. Evidence, not fear, should guide our decisions.  
Yes there are absolutely valid exceptions, but those cases are rare and certainly should not be the rule.
She then responded:
Understood but although selfish, my responsibility is to my kids not the public.   But I certainly respects others opinions.  If my kids get one of those illnesses, I take full responsibility.  It is a chance I am comfortable taking.
Excuse me? This may be a chance you are comfortable taking for your own children, but if you don't vaccinate your kids, you are also taking that chance with my kids. Are you going to take responsibility if one of them gets sick - or dies - because you chose not to vaccinate? And how exactly would you do that?
I also got the following response:
I'm a mom who has seen some pretty dark years with autism. I would have traded measles for autism in a heartbeat.
How horrible! Is she really saying that she'd rather risk her child dying? Does she also let her child drive in the car without a seat belt? I doubt it. It is so easy to say we'd take one risk over another because most people don't understand how to assess risk, and we haven't grown up seeing our friends and neighbors suffer from these diseases. And why is that? Because we have vaccines! I remember going to work with my dad and meeting another doctor who was disabled because he had polio as a child. Our parents remember these diseases, and we all got vaccinated. In one generation these diseases all but disappeared in this country. I'm afraid it is going to take some pretty bad outbreaks of these diseases before some people get the picture.

I think Shannon De Roches Rosa, one of the founders of Thinking Person's Guide to Autism, said it best as part of this same discussion:

I'm concerned about any recommendation to delay vaccines, even an empathetic recommendation based in a complex understanding of vaccine and autism issues plus autism parents' fears, reality, and concerns. Worried parents (and those who oppose vaccination) will likely interpret such recommendations as evidence of a vaccine-autism connection, when no such connection has ever been made -- despite the enormous amount of autism research diverted in that direction over the past decade. 
Delaying vaccines will leave your child vulnerable to diseases that are on the upswing. And, having just listened to my mother's best friend's story of her daughter being stricken by measles encephalitis at age 5, lying comatose for months, and her parents being told that she'd never recover (unlike Roald Dahl's daughter Olivia, she did); and having had conversations with parents whose children have recently died from whooping cough, it's important to remember that most of us don't have the context of living with vaccine-communicable disease that used to give immunization the urgency it deserves. 
Later this week, I'll be writing about rates of immunizations in schools. Sneak preview: it isn't pretty.

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