Early last month, the now-famous paper by Dr Andrew Wakefield that supposedly linked vaccines to the onset of autism, was formally retracted by the Lancet, the journal that published it back in 1998. This was a monumental decision, considering it was the conclusions drawn from this paper that launched the firestorm of debate around the safety of vaccines, and likely the cause of the current vaccine crisis.
It goes without saying, but in case some of you have not made the connection yet, this retraction means that there never was a valid link between vaccines and autism; not even one study can show this. Wakefield’s study was never able to be replicated (because of his poor and dishonest methods), and every scientific study conducted following his that attempted to find a similar link was unsuccessful. Scientists have been saying for years that there must have been something fishy with his study to have gotten that result, but the public (at least a large portion of it) would not listen. Now even Wakefield himself has said that his study is invalid, and yet the supporters remain.
I find it very interesting that there was so little media coverage of the retraction as compared to the attention the paper got when it first came out. One would think that news of false evidence provided to support a false theory of autism would at least be as big of a story, if not bigger. However, that was not the case. Incidentally, I predicted this would happen the very moment I read the press release.
There are a few reasons for this reaction.
First, I must clarify that the “Anti-Vaccine” crowd is a diverse group, each sub-type with their own agenda and reason for believing in the theory so vehemently.
The first group of believers are the Anti-Pharma crowd. These people have been looking for an opportunity to nail the pharmaceutical industry for years, and this was their golden opportunity. So because of their hatred of all things big-drug-company related, no way are they going to back off from their offensive. In their mind, this one study doesn’t matter; the pharmaceutical companies and the government are all out to screw the public any way they can. Some of these types of believers are successful in getting general conspiracy theorist-types on-board, because it just sounds like such a great story.
Another type is the General Anti-Vaccine crowd. These people have been against vaccines specifically for probably their whole lives. They think that injecting live bacteria into our bodies does us more harm then good, and so they are anti-vaccine, anti-flu shot, the whole ball of wax. I feel that while this group may be well-intended, they are grossly misinformed about the science behind what vaccines are and how they work. I have some friends who fall into this category, and I have lost my voice arguing over this topic over and over. Some people just refuse to listen to science long enough to understand it, and once they make up their mind, the conversation is closed.
A third type of believer is the Autism Parent. Now, this is the group I really want to discuss, because I think I understand where they are coming from and why. Because of their unique circumstance (having a child with autism), they are easily susceptible to arguments made by the other two groups, the Anti-Vacs and the Anti-Pharmas, and they are practically preyed upon to join the cause. The Autism Parent is the group I can sympathize with, because I think I’ve had some insight recently as to their perspective on this whole debate and why they refuse to give up on the Vaccine Theory.
The Timing
First of all, the timing of the onset of symptoms coincides with the timing of when children get their first round of vaccines, so it seems natural to point to the vaccine as the cause.
Many parents have reported that their child was fine until the day they got their vaccines, and then the decline began right afterward. Maybe that was the case; I cannot say for sure, because I wasn’t there, and we can only go on what we hear from parents.
However, it is a common phenomenon to have a confirmation bias when recalling events like this, ones that have a high emotional connection. You are more likely to remember the events as falling into that exact time frame because of the unconscious desire to attribute a specific cause, and every other piece of evidence that you can recall will seem to fit into that schema to support it.
I am not saying the parents are lying or making things up in the least; this is a naturally occurring cognitive bias that seems 100% true in the mind of the person recalling the events, and happens frequently.
In fact, the timing of the onset of symptoms is a factor in the next point I am going to make as well.
“Something” to Believe In
They need answers—a reason why, how, when, and where their child developed the disorder, and they need the answers now. I have worked in the field of psychology with children with Autism Spectrum Disorders (ASD) for over seven years now, and have spoken with many, many parents about the potential causes of autism. The overriding feeling I get from parents is the frustration of not knowing how it happened to their child.
Most of the children I have seen come from families with highly intelligent parents—doctors, professors, highly specialized technicians, and other fields that take significant intellectual ability to achieve in. Siblings of children with ASD are often typically developing, although may have some quirky traits of their own. All in all though, it would seem that the autism came out of nowhere.
When this happens, the first thing you want to know is why. What did we do wrong? Was it something during the pregnancy? Was it some mystery recessive gene that was passed on? Was it something that my child was exposed to as an infant?
One reason why autism can be especially distressing for parents is because usually, the child will start out as a normally developing infant, reaching the typical milestones- responding to their name with eye contact, playing with toys, and beginning to develop language. Then around 18 months of age, they start regressing. They suddenly stop making eye contact. They lose what language they had. They stop exploring the environment with the variety and vigor that other toddlers do. And this regression is what usually frightens parents into getting their child evaluated.
I knew all of this from an academic standpoint as a result of my education, but it wasn’t until I saw a family’s video compilation of their son from birth to the emergence of autistic symptoms, that I really felt the pain of what it must have been like to witness it in real time. Am I saying I know exactly what it feels like to be a parent of a child with ASD? No. Not even close. But when I saw that video of my client as a baby—babbling, responding to his name, playing with toys, and then watched what followed—gradually losing the few words he had, no longer smiling and cooing, no interest in toys, the distant look in his eyes that didn’t recognize the sound of his name, the parents begging him to look at them with the sound of sorrowful desperation clearly in their voices, I started crying myself.
To have a child born with a disability is heart-wrenching enough. But when your child is born and seems healthy, parents breathe a sigh of relief. They relax a little, feeling fortunate that they escaped the risk of the genetic roulette wheel and came out a winner with a healthy baby. It is once you start feeling confident that everything is fine that the symptoms begin to emerge. That feeling of the rug being jerked out from beneath you when the regression starts out of nowhere is what many parents describe as the shot to the heart.
Just as a parent of a child who has some type of debilitating illness or physical defect needs to know what it is and how they contracted it, parents of children with ASD need an answer as well. Other illnesses and disorders can be traced back to genetics, or a specific toxin exposure, or a defect in an organ, or at least something semi-concrete. Parents of children with ASD need to have an answer as to why it happened, so they can ease their mind. This gives them some kind of closure, in a time when they are feeling so helpless. The dissonance of not having an answer is one of the most painful aspects of this disorder; being so out of control of the entire situation. Most importantly, the parents need to know that it wasn’t something they did to their child. To have an outside agent, or cause, for the disorder gives them peace of mind.
If you can understand just how desperate these parents are for an answer, and how they endured almost 20 years of inconclusive research to provide it, when the Vaccine Theory of Autism came along, it was like manna sent from heaven. They thought, finally, we know where it came from, and it was nothing we could have anticipated at the time. It was a specific thing, a shot of bacteria or mercury entered the bloodstream, and it reacted with their child’s DNA, and this all resulted in autism. A sigh of relief was expelled in many a homes when this news came out. However, there is still that lingering guilt that says, “Could I have done anything to prevent this?” And that is where the anti-vaccine campaign comes in. By being an activist in the campaign against vaccines and bring the “facts” to the public, they feel they are saving someone’s child from developing an ASD, saving another parent from debilitating heartache.
They Need a Champion
So far, the reasons I mentioned explain why they passionately supported the Vaccine Theory in the first place, before they knew the real facts behind it. But even now, after the retraction, why do they still cling to this belief?
Enter Jenny McCarthy.
There was a Time magazine article back in February titled “The Autism Debate: Who’s Afraid of Jenny McCarthy?” in which they interviewed the celebrity Autism Mom about her son’s progress and her feelings on the retraction of the Wakefield paper, among other things. Without getting too much into the content (you can follow that link to read the excellent four-page article), I will just point out a few things that are relevant here:
- Jenny McCarthy (JmC, as I like to refer to her) still believes the vaccines gave her son autism, even though Thimerosal (the mercury-containing organic compound) has not been used in vaccines since around 2000, and her son Evan, diagnosed with autism, is seven years old. You do the math. Initially, it was the Thimerosal that was to blame, but now she just blames the vaccines in general, despite lack of confirmatory evidence.
- JmC claims her son was “cured” of his autism after years of widely varying types of treatments, most of them not recognized as valid treatments for autism. Some now question whether or not Evan even had an ASD; his symptoms mimicked another disorder, Landau-Kleffner Syndrome.
- JmC is quite charismatic and believable, and makes parents want to trust her. She is warm, compassionate, and sympathetic to their plight. She cries with them, gives them her personal phone number, and basically becomes the BFF for every parent of a child with autism.
Point number three is the key here. JmC is the savior every parent has been waiting for.
Parents of children with ASD can get emotionally weary, mentally taxed, and feel hopeless about their child’s future. It is difficult to keep high spirits every day, when the progress can be so painstakingly slow, that it gets nearly impossible to keep the positive energy going, cheering on every new little gain. Parents need to keep their hopes up. They need to keep believing that everything they are doing, the hours and hours of therapy, and the costly schools and treatments, are going to help their child to lead a more normal life someday.
JmC provides that hope. She is relentless in her optimism about “curing autism”, relentless in her fight against “the system”, relentless in making sure everyone knows about the supposed dangers of vaccines, and relentless in making sure that every child with autism is given a chance at a better life. That dedication to every child with autism, however misplaced her reasons, methods, and beliefs about the cause, is what gives her star-power in the eyes of parents.
Her unending enthusiasm in “fighting the Big Fight” is what gives parents the energy to keep going. Even though I feel she is dead wrong in her opinions regarding almost everything (and is the leading cause for the growing population of un-vaccinated kids), she is one dedicated woman. And honestly, I think that is why even if some parents don’t really believe in her reasons behind her activism, they still support her because they need her activism. When parents feel like everything in the world is going against them, it probably feels good to have someone in their corner, fighting for their kid, even if it is a crazy woman.
So I guess the final point I am making here is that everyone needs a hero, and as it turns out, JmC is the hero for the autism community, at least until another one emerges. For the sake of the science community, un-vaccinated children, and the future children of the world, let’s hope that happens sooner rather than later.
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