By Anne Dachel
Recently JB Handley asked me to explain myself--what I do and why I do it. The simplest way to put it is to say that I write about autism. I write to members of the press who cover autism. I try to wake up them up to this health care crisis happening all around us.
In the most unassuming way possible, I like to describe myself as "Just a Mom" (JAM), meaning that I don't have an MD or PhD after my name. I'm an ordinary citizen--one of the great masses who are supposed to be running this country. I'm very proud of my title and "just" isn't meant in any way to be demeaning. All great changes in society have come about through the work of ordinary individuals and the autism community is made up of lots of people who are "just a mom," "just a dad," and "just a grandparent." We speak from experience that qualifies us as the real experts and we're moving this nation to the truth about autism.
My son John is 20 and has Asperger's Syndrome officially. John does very well which gives me the time to monitor the news coming out on autism and respond to reporters. I do this for all the parents whose lives afford them no time to write letters. They are my great heroes and my inspiration.
A while ago I wrote "The Really Big Lie About Autism" recounting my personal experience with the disorder. Every parent I've ever met in the autism community has their own story of how they came to the realization that vaccines, especially ones with mercury, are the cause of the explosion in autism. Mostly we're self-taught because the mainstream medical community has turned a blind eye to this disaster.
I think for most of us the Internet has been our salvation. It's the source of all the claims out there. We can sift through the information and come to our own logical conclusions. The Internet is also the great connector for us. It puts a parent in touch with countless other parents everywhere. It makes us a political force that is finally having an impact. It allows us to publicize rallies and conventions. It's a means to alert parents to government action on autism. Most of all, it makes us realize that we're not alone. We can have hope because we are an army now.
About six years ago I started my Internet involvement with autism. I began to read about the disorder in an effort to better understand my son. I had been told that autism was rare and genetic. I had never challenged that. I remember the first time I read, "Some parents think the vaccines cause autism." My first thought was that sounded crazy. Everyone gets vaccinated. How would a vaccine cause a child to be autistic? Then I read it again somewhere else. This illogical claim kept coming up and I kept dismissing it. Finally I read that the mercury in vaccines was the real culprit. I can remember the chilling effect the word had on me. Why would anyone put something so deadly in vaccines?
I asked my brother about this. I figured he would know, being both an MD and having a PhD in biology. He told me that when he was in med school in the 1980s, they were told in class that mercury should never have been allowed in vaccines, that it would never pass FDA standards today, but that the pharmaceutical industry is too big and powerful to get them to stop using it.
It was shocking to me that the medical community could be so complacent about this. Who's in charge here? Parents trust that there is oversight. How could we be deceived like this?
Maybe it was anger that inspired me from that point. I knew one undeniable thing: No matter what officials were saying, the autism epidemic was real. Doctors weren't suddenly thousands of times better at their job and children weren't born with autism inherited from their parents.
Being a teacher with a few years experiencem, I could think all the way back to college. I had never heard about autism. I'd been at a high school in Illinois for eight years. I taught kids from Spain and Italy at a school run by an Irish religious order in England, and after I was first married, I was a substitute teacher everywhere from kindergarten through technical college. You'd think somewhere in my past I would have encountered autism, yet I'd never had a student with autism or seen someone display autistic behavior.
When my young son regressed and started toe walking, spinning, flapping his hands, not talking, staring and screaming for unknown reasons, I panicked. The characteristics commonly associated with autism were completely alien to me.
I couldn't get others to share my alarm. Few had any experience with autism at the time. John was in speech therapy and they couldn't understand him. When he was finally diagnosed by a psychologist at age eight, his speech therapist didn't believe it. She told me she'd met an autistic child once and he was nothing like John, a reaction that shows just how uncommon autism was back in those days.
With little local help, I became self-taught on the Internet. Then I started to inform the press. Over the last six years, I've seen tremendous changes in the coverage on autism. Back at the beginning, I'd find maybe one or two articles a day on the Internet news about autism. Now there are several every hour.
Typically back then there'd be a press release from the Centers for Disease Control and Prevention about autism, including a denial of a link with vaccines, and that same piece would be put out by several hundred news sites. Today, reporters are assigned to cover autism. They may not be doing the best job presenting the issue, but the controversy is out there everyday. I'm sure this is why the CDC had the Institute of Medicine come up with their findings that cleared vaccines of a link to autism in 2004. The press was more than eager to announce what officials had confirmed: Vaccines don't cause autism." They hoped that they would be able to move on from this hot button issue.
It hasn't worked. No matter how many times Julie Gerberding of the CDC and others like "vaccine expert" and rotavirus vaccine patent holder, Paul Offit tell us that all the science is on their side, the controversy only grows worse. Reporters are finally looking into the debate that just doesn't go away. Coverage is getting better. Parents are talking to the reporters who cover autism. Whenever a story comes out, more people ask about autism. The controversy is reaching the uninformed. We are demanding that the facts be honestly presented so that the public can decide for themselves who's probably right.
I divide most members of the press covering autism into three groups: uninformed, misinformed, or under-informed. The uninformed news people are those who willingly report that autism affects one in every 150 children in the U.S. but at the same time they ignore the dramatic increase from one in 10,000 in the 1970s. They completely miss the obvious and alarming fact that one in every 150 adults doesn't have autism. They also don't speculate about the cause . Autism is accepted, no questions asked.
The misinformed reporters tell us that autism only seems to have increased everywhere among our children. They happily report that all the kids with autism are the result of "better diagnosing" and "greater awareness" on the part of doctors. They get their information off the official autism website of the Centers for Disease Control and Prevention and are quick to repeat that "several studies have looked at whether there is a relationship between vaccines and autism and that the weight of the evidence indicates that vaccines are not associated with autism."
The CDC facts become the last word on autism and these reporters completely omit the volumes of scientific research linking vaccinations to autism.
Those under-informed in the press will report that the rate of autism has skyrocketed in recent years. They'll tell us about the huge financial burden because of all the autistic students in our schools. While they do note the controversy involving vaccines and autism, they leave autism as a mystery that we just haven't been able to solve.
The articles with the same tired claims by officials now evoke anger from parents who've heard them for years. We're demanding that the autism controversy receive responsible coverage, not just a quick dismissal. People are slowly being made to consider the unthinkable question: Through complete oversight failure, have vaccines damaged a generation of children? As more people become aware, there has developed a growing demand for action and an end to the pretense that there's no problem to address.
We are truly an army now, we're connected and informed. I like to say that there is nothing more powerful than the countless ordinary parents who are devoting their lives to public recognition of the autism epidemic.
Anne Dachel, JAM
Anne McElroy Dachel is a teacher and a married mother of four children, including son John 20, with Asperger's Sydrome. She is a member A-Champ (Advocates for Children's Health Affected by Mercury Poisoning, National Autism Association and Generation Rescue. She lives in Wisconsin.