It's hard to run a marathon that pushes you harder than you have ever been pushed -- physically, emotionally and spiritually. One for which you did not train or set out to run but one that you just woke up to find yourself running one day. One that challenges your endurance with every step.
What happens when you turn your head to see how far you have come only to realize you have been jogging in place?
For over a decade, I've relentlessly searched for answers to the connections I believe exist between my son's autism and vaccines he received. Historically, autism has been considered a genetic condition so I am constantly told I just imagined things. Surely his autism was always there...always evident...from birth. Liam must not have been engaged the way that I remember prior to that summer when he received his MMR. He didn't really play peek-a-boo with me. He didn't really talk. He just disappeared at the same time he got his shots but the vaccines didn't do it.
It was coincidence. Coincidence is not the same as causation.
None of those people lived in my home. None of those people knew my child personally when he was a baby. None of those people saw my bright-eyed son disappear into the abyss of autism right before them.
Recently, I dusted off an old videotaped copy of a story that aired on CNN in October 1999 called "A Question of Harm?" - the first nationally televised piece linking a vaccine to autism. I hadn't watched it in a long time. It's painful for a number of reasons. But I took a deep breath and pressed play.
The memories came flooding back. Liam was fine before his MMR and severely affected after.
Eleven years ago, frantic to sound an alarm, I called every network, begging them to help us ask this question -- to warn parents. CDC statistics in 1998 demonstrated one in every 500 children with autism, a staggering increase from one in 10,000 in ten years. No one would listen.
Their response? "We already did a story on autism this year. Sorry."
But Julie Powell, a CNN producer, stepped up. She took a big risk. 15 months later she, and correspondent Linda Patillo, bravely let America and thirty-three other countries know there just might be a question of harm with vaccines for some children. They helped us ask what if.
What if a potential connection exists between vaccines and the development of autism?
Here is their segment.
When I look back over the decade, I see enormous progress in Liam's development. He is now in a sixth grade classroom, unassisted except for a modified curriculum -- making good grades. He is sweet, gentle, thoughtful and caring. He has an enormous appetite for learning and a hope for his future. He has a social life complete with a girlfriend, a Facebook account and a cell phone. He just tried out for the basketball team. He lights up every room he enters. He is an inspiration to me, loved by anyone who knows him.
Liam is my Gatorade. He keeps me running when I get light-headed and dizzy. He is my coach. He is my cheerleader.
But when I look back over the last ten years of the autism/vaccine controversy -- or just the safety of vaccine in general, especially from the perspective of the media, I don't see the same progress. The media has not advanced the ball following this developing story in the way I had hoped.
As I replayed the tape, I thought this could have been filmed today, in October of 2009, in any other three year old's house. Today's media repeats the script Julie developed but includes new faces. Child is fine. Child gets vaccine. Child develops autism. Parents cry. Child stares into space then cut to scene of child stacking blocks with his therapist. Doctors still say we don't know what causes autism, except now they affirmatively add -- "but it's not vaccines." Parents rally. Government officials still tout the safety of all vaccines. Health agencies are still trying to figure out how many kids with autism there are out there. Doctors are better at diagnosing, or maybe not. They don't know. Congress is still holding hearings on the issue. Parents still wonder when someone will answer their questions.
Fade to black.
I wondered -- where are the brave investigative journalists we need to ask these hard questions?
There are a couple that will pick up the ball like David Kirby or Sharryl Atkisson but the majority of the reporters that cover these stories are like Amy Wallace, entertainment reporter for Wired Magazine, who, in my opinion once again does not question what she is told, she just regurgitates the propaganda she receives from the vaccine industry and industry supporters. Or Nancy Snyderman who tells us it is not our job to question the safety of shots and to "just get the damn vaccine!"
In the meantime, while we wait for mainstream media to really honestly take a look at these questions, thousands of families, a few politicians, a handful of researchers and doctors across the United States work hard to sound that alarm. These people keep this issue burning bright in the media even when the medical community tells everyone to look away from the light. Vaccines, and their risks, are touched on in a variety of news mediums.
Time marches on and the mainstream media continues to follow that recipe handed down 10 years ago.
Where CNN delivered fresh journalism in 1999, stories today are stale, even moldy. Generally speaking, the media doesn't dig. They do not do their job and ask the questions that make government officials, PhRMA spokespeople or the American Academy of Pediatrics squirm. Now that's entertainment, Amy.
Here are some questions for the White House Press Corps the next time they attend a briefing regarding Swine Flu.
"President Obama, can you please explain why HHS, along with the local and federal law enforcement agencies would not allow a person to pour Thimerosal (an ingredient in some vaccines which contains ethyl-mercury) onto the stone plaza outside the HHS building in protest because it is classified as hazardous waste?"
"Did you know if the amount of ethyl-mercury in one dose of a Thimerosal containing H1N1 vaccine were spilled on the ground HazMat would be required to clean it up?"
"Do you find it logically inconsistent that something is toxic and hazardous to humans when on pavement but not when injected into babies?"
"Why is your administration recommending children and pregnant women receive flu vaccines containing 25 micrograms of ethylmercury each, dismissing any harm to humans when 25 micrograms of ethylmercury is well in excess of what the EPA considers hazardous and the manufacturer of Thimerosal says it should not be injected into humans period, rather than mandating Thimerosal free vaccines for this population?"
"Ok, regardless of whatever study might be cited, do you think injecting a baby with something that bears a skull and crossbone symbol on the label is prudent?"
The basic question of harm asked all those years ago, "Can a vaccine, multiple vaccines, or the ingredients within those vaccines, serve as an environmental trigger for autism in a certain cohort of children?" has not been answered...completely.
From time to time, answers do roll in.
Just last month, researchers from Stony Brook University published a research abstract for an epidemiological study in the September 2009 issue of Annals of Epidemiology which revealed findings suggesting that U.S. male newborns vaccinated with Hepatitis B vaccine had a three-fold greater risk of autism spectrum disorders. Additionally, an upcoming collaborative study conducted by the University of Pittsburgh - School of Medicine, the University of Kentucky and Thoughtful House Center for Children in Austin, Texas reveals evidence of substantial functional brain damage in infant primates who received the birth dose of Hepatitis B Vaccine.
Why isn't this information scrolling across the news networks so parents can make informed decisions?
I don't believe I was truly afforded a fully, informed choice for Liam with regard to vaccination. The risk of this medical procedure that altered a significant system within his body, the immune system, was completely downplayed and presented as a simple baby milestone, a rite of passage. If I had taken the time to just read a package insert for the vaccine, I might have thought about researching it more. I scrutinized the package insert that came with his antibiotics, it just never occurred to me to question the harm a vaccine could potentially cause.
I am tired. I am out of breath. Some days I can only see a couple sips left in the bottom of my Gatorade bottle. But I won't quit running for that yellow tape at the end. I cannot quit this race.
I will not stop fighting for the answers to the truth about what happened to Liam.
I will not quit pressing government officials or medical professionals because those questions make them feel uncomfortable.
I will not quit demanding the media to ask the hard questions.
I will feel sick every time the CDC releases new numbers reflecting the prevalence of autism which has moved from 1:500 to 1:250 to 1:166 to 1:150 to 1:91 since Liam was diagnosed.
I will scream every time they tell me the one in 58 boys today with autism does not reflect a true increase but is primarily due to better diagnosis.
I will grit my teeth every time the same medical community that is now apparently so good at diagnosing can't find those same autism diagnoses in one of every 58 adult men.
I will hit my couch every time I hear some doctor on a news program say that this question has been asked and answered.
I will cringe when I hear a pregnant woman say "I got my flu shot today."
I will hold the United States Government accountable for fiddling while Rome burns all around them with our future generations.
I will wince every time I hear someone say "We don't know what causes autism. But we do know it is not the vaccines." When I know in my heart, it really is just not truthfully scratched off their list.
And I will still maintain that giving children mercury, on purpose, for no other reason than to preserve profit margin, is stupid.
A question of harm? Yes.
Harm exists in refusing to continue to dig down into hardcore science. Harm exists in refusing to look at the science at a cellular and biological level. Harm exists in continuing to wave the banner of epidemiological statistics as unrefuted proof of safety and to demonstrate that what we saw happen before our eyes with our children could not have happened. Harm exists in the arrogance of the government, the scientific and the medical community who refuse to listen to parents accounts.
Where harm does not exist is in continuing to look under the vaccine rock to find out why parents believe this is happening. That's what good scientists do -- they continue to ask questions, peeling back all the layers until there is an answer.
Genetics alone has not caused autism to increase from an incidence of 1:10,000 to 1:91 in a twenty year period. I asked the CDC earlier this month to let us know of one other genetic condition that had ever demonstrated that exponential growth rate. They were stumped. Something environmental is causing this. Something universally environmental even though we all eat different food, drink different water and breathe different air.
We are far from having an answer. But if the media will ask new hard questions, those questions may provide a base to a solution. Maybe if the media attacks autism with the same sense of urgency that they have the Swine Flu now that 1:58 boys are being diagnosed with it, one day soon we will have the answers we seek as to what happened to our children.
On that day, I will say "I fought the good fight. I have finished the race. I kept the faith."
In the meantime, thank God for blogs.
This column is dedicated to Liz Birt. She was a relentless advocate searching for answers to the question of harm when it comes to vaccines and autism. I didn't know her personally yet at the time this was filmed. I met her the weekend that this aired in Cherryhill, New Jersey at the Defeat Autism Now Conference . Her letter is the email I read during this piece. Her sweet son Matthew is the boy in the picture. We lost Liz too soon. I miss her dearly. Her legacy lives on. A donation she made to Thoughtful House helped make the aforementioned primate study possible.