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Friday, May 30, 2014

My Love-Hate Relationship with the Anti-Vaccine Movement

First off, I know what some people will say about the title of this entry.   “We’re not anti-vaccine! Stop calling us that!”  In that case, please come up with another name for yourselves.  Give yourselves  a name that identifies your movement so that when you are referred to, people will know who you are.  If I called you the Precautionary Vaccine Movement, few people would know who I’m talking about.  So please, get a name and make it stick.  Until then, I’ll refer to you as the Anti-Vaccine Movement (AVM).  I recognize that it may not be literally accurate, but there will be no doubt about who you are.
Here’s why I love the anti-vaccine movement.  They are protecting everyone’s right to make medical decisions for themselves and their children.  They take down the façade of the demi-god like authority of the medical system and the pharmaceutical industry and they encourage people to do their own research.    The truth is that the people in general are not fully informed of the choices they are making or even told that they have a choice when it comes to risks and benefits of medical interventions.  This is especially true when it comes to pharmaceutical products.   So I thank the AVM for raising our awareness, encouraging us to make our own choices and making sure that we continue to have the right to make those choices. When it comes to autism, those who are part of the AVM are also the people who believe in helping the body heal .  They are the ones promoting therapies and nutritional supplements.  They are the people that believe autism is an environmentally induced condition as opposed to a genetic inevitability that little can be done about.  They are the people who believe that autism is an epidemic that was almost non-existent in previous generations, not just undiagnosed.  They are the people that believe autism is a health issue, not just a learning disability.  They are the people that believe our children can heal and want to increase the accessibility to medical intervention and therapies to do so.  They are the people that have no tolerance for another study on maternal age and autism.
So what’s not to love?  The difficulty I have with the AMV is the hyper-focus on vaccines.  Specifically, a belief that if it weren’t for vaccines there would be no autism epidemic.  Yes, vaccines are not completely risk-free.  Parents should be fully informed of the risks associated with the choices they are making for their children.  A study comparing the health conditions of vaccinated vs. unvaccinated children needs to be done.   However, while we are hammering on the risks of vaccines there are plenty of other things that could be and should be investigated.  While the AVM acknowledges that other environmental factors could be contributing to the autism epidemic there is little interest in researching them;  they think they have the answer.   Many of them dismiss any study that is not about vaccines.   You can often see sweeping statements on AVM blogs that are passed off without reference or question.  Here is just a small sampling.
The rate of autism in unvaccinated children is 1:10,000 – Really?  Weren’t you just complaining about the fact that there is no study of unvaccinated kids and autism?  If Paul Offit or a member from the pro-vaccine movement said “Unvaccinated children get autism at the same rate as the general population,” wouldn’t you be asking for a specific reference?  So why don’t you ask that one be provided when a similarly sweeping statement is made by someone on your side?
Autism levels have increased at the same rate of increased vaccinations  - Okay, not just similar but the exact same rate?   Haven’t more informed parents been choosing not to vaccinate, yet autism rates are still rising?  Hasn’t the sum total of thimerisol in vaccines significantly decreased over the past few years, yet again, autism rates continue to rise?   How can you say the rates are the same?
Vaccinations are the main cause for the increase in autism.   This is, at best, a huge overstatement.     Maybe, there is some evidence that vaccinations may contribute to autism is some cases, but the conclusion that vaccines are the main cause of autism is blowing the evidence –even the anecdotal evidence -way out of proportion. 
Unvaccinated groups like the Amish have autism only in cases of environmental mercury exposure:  So every known case of autism among the Amish have an unquestionable link to mercury exposure?  Do you have a reference for that?  Could there possibly be any other difference between the lifestyles of the Amish and the modern American family other than their vaccinations and mercury exposure?  Like food?  Or the fact that they don’t use electricity?  Or the chemicals and pesticides they may not be exposed to?
Between 98%- 99% of cases of autism are due to vaccine injury  -Of course, there’s no epidemiological evidence for this one either.  But if it is true, can they explain what’s going on in Cuba for me? Cuba reports a rate of autism at only 0.00168 percent while the U.S. rate stands at 1.13 percent.  About 99 percent of Cuban children are fully vaccinated versus about 85 percent of American children.  Both nations vaccinate for similar diseases with very similar vaccination schedules.  (The Cuban childhood vaccination schedule includes protection against 13 diseases in 11 vaccines in a total of 34 doses while the United States requires 11 vaccines in 36 doses.)  I know what you’re thinking: we don’t know if vaccines in both countries contain precisely the same ingredients and we don’t know the precise definition of “autism” in Cuba.  True enough, but we’re talking about a HUGE difference in incidence!  Rates of autism are 298 times higher in the US than in Cuba.  You would have to show some significant differences in the ingredients or diagnoses to account for that kind of disparity in statistical data.  If the Cubans did not vaccinate their children the AMV would be doubtlessly pointing to them as proof of the vaccine autism link.  When the shoe is on the other foot, they are less impressed.
Vaccines do not cause every case of autism, but they have indeed caused the autism epidemic – An epidemic is defined as a certain disease in a given human population that substantially exceeds the expected rates of incidence based on recent experience.  So the increased numbers of autism are almost entirely due to vaccines ?  And the number of autism cases that do not involve vaccine injury are about what we had expected to occur?  On top of the fact that there is no evidence to back up this statement, it is extremely dismissive of people whose cases do not fit a particular agenda.   
There is a growing double standard for “evidence” or “proof”.  The validity of a study as determined by the AVM is based more on whether people like the conclusions than if the research was done well.  Just the title of a journal article is enough to have research dismissed. The study entitled “Residential Proximity to Freeways and Autism” was quickly rejected by many in the AVM based on the fact freeways have been around for so long and the increase in autism numbers is relatively recent. There was no consideration that the environment near or around a freeway now may be in some way, different than in past decades.   Like many studies before it, it was labeled a distraction to obfuscate the real cause: Vaccines
Part of the reason this vaccine emphasis bothers me so much is that I sense that the parents of the AVM see their ‘vaccine injured’ children as different from other children with neurological disabilities.  Their children were poisoned; their children were not supposed to be this way. God didn’t intend for this to happen to them.  I take this very personally because my daughter was not vaccinated at the time of her diagnosis.  Not surprisingly, many in the AVM don’t like to hear about her case.   First, it doesn’t support their cause and second, it introduces the possibility that many of children they believe where adversely affected by vaccines were not.   
To some, the fact that she has autism and has never been vaccinated has a simple answer.  “Her case must be genetic.”  This puts her in a different category.  It excludes her from the autism epidemic that is hitting this generation.  As if she were supposed to be autistic. As if looking for environmental factors wouldn’t help her.   There’s a sense that the vaccine injured are more entitled to a better quality of life – Their condition is not genetic. Pinpointing the cause primarily on something injected into a child at a specific time during their growth and development fully supports this distinction.  Without this single point of cause, the contrast is fuzzier.
Regardless of the cause, we should never see one child as more or less worthy of neurological well-being than another.  All children are entitled to the potential for a good life.  The ‘vaccine injured’ are no more or less deserving than any other child with autism.  Nothing should be dismissed just because it doesn’t fit with the prevailing theory.  We need to keep searching.
Generation Rescue is a group that is generally supported by the AVM.  They conducted a phone survey to determine the causal link between autism and vaccines.   The study was not without its flaws but there were some interesting conclusions.  According to GR’s results, vaccinated boys are 61% more likely to have autism than unvaccinated boys.  Vaccinated girls are no more likely to have autism than unvaccinated girls.  If we assume that this study is accurate, (and that is questionable) it still doesn’t find vaccines as the primary cause of autism.   In simple numbers, if there are 100 kids with autism, 30 of the cases are likely related to vaccinations,  70 of them are not. Those 30 cases are extremely important and we should continue to work to get answers for them.  The other 70 cases are just as important.  They shouldn’t be put up on a shelf waiting for the pro and anti vaccine movements to hash it all out. 
It appears that we are not getting anywhere arguing about vaccines.  Both sides are entrenched in what they believe and the autism rates continue to rise.  We could (and should) do more studies on vaccinated vs. unvaccinated groups of people but it seems likely that either side would dismiss results that do not fit their agenda.   If we’re not getting anywhere with vaccine research, how about looking at other environmental causes?  Fire retardants, food preservatives, pesticides, herbicides, plastics, food processing, arsenic in our rice, air pollution, GMOs, radiation, over-sterilizing, lyme disease, endocrine disruptors,  parasites, the list goes on and on.  The EPA and the FDA have no idea exactly how many chemicals are used in consumer products, nor what products they are used in.  Shouldn’t we require that their standards change?   Don’t these things warrant some research?  Couldn’t they be a huge piece of the autism puzzle?  The efforts in this area are minimal at best and there should be a call for more efforts to find environmental causes of autism.

Like a growing number of people, I believe that there are several causes of autism.  Vaccines most certainly may be one of them, but if they are, that’s only one piece of the puzzle.  If the  AVM dismisses people who don’t agree with them 100% or whose experiences do not reflect their own, they will be taken less seriously and find themselves with diminishing support.  This is already happening.  The autism community needs to join forces with people who will help our children achieve a greater quality of life, recognize the seriousness of this condition and prevent autism rates from continuing to rise.  Sometimes that will mean looking into vaccines.  Sometimes that means pursuing research in other areas.  In the meantime, let’s all keep an open mind.  None of us has all the answers. 

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