Editor’s Note: Below is an email sent by an autism parent to Age of Autism complaining, in part, against my banishment as contributing editor to the site and ends by requesting that I be allowed to contribute again. While I enjoy my new forum, Age of Autism is nonetheless dishonest to continue listing me as a contributing editor when I can no longer contribute to the site. Though Age of Autism never published the email, it was then forwarded to the Bolen Report where it was first published online in full.
“I’m writing to all of you to tell you about my frustrations with the autism movement. I agree with Tim Bolen that right now we DON’T have an autism movement. We don’t have ANYTHING AT ALL. And it is time to change that. I looked at AoA and then the Canary party full of optimism. I contributed money. And what is the outcome? NOTHING to show of. The Canary party has made no progress whatsoever. And kicking Jake Crosby out of AoA is low and disgusting. You guys should be ashamed of yourselves. You were supposed to be the glue that united all of us, but you’ve turned into one more…
So, what is the autism movement?
ARI, TACA, Generation Rescue, NAA, Autism Speaks (though I absolutely believe that this is big pharma in a sheep costume). and many, many others… all going in independent ways and nobody is accomplishing anything at all, we are too broken.
What is our message? We can’t even agree on one…
So, I understand (and welcome) Tim Bolen’s frustrations and harsh remarks. I think we need to listen to him. Let’s work with the Health Freedom Fighters and see if we can take this “autism movement” to some place…. From my side, I wanted to contribute some of my ideas, in case they take you to some place that you had not thought out. So, here are some of the top priorities in my opinion:
1. Winning the information battle regarding autism and vaccinations. This is a MUST.
We ABSOLUTELY need to change the social discourse on vaccinations. Big pharma keeps paying journalists to publish these bogus reports on how we are having measles outbreaks and those are horrible and the cause of them is the autism community (and Wakefield, of course). We need to stop just weakly responding to those statements and change the approach: we are the ones that need to keep publishing about how we have studies that vaccines cause autism, there are no studies to evaluate combinations on vaccines, big pharma wants to push for more vaccines because of money (and no risk to them), CDC is the marketing branch of big pharma, etc. So, we need to accomplish this through several actions:
a. Develop a list of journals and journalists that are on our side and can help us push these messages. We need to keep feeding them information and support them as much as we can.
b. Develop some standard messages with links to articles, etc where parents like myself can go and use to push specific messages to specific articles. Right now every parent has to make their own research to find all the links with articles, all the stories, etc. We don’t have that much time. But if we could have a central place (like the one on the 12 or 14 studies), that would be great. It would help us deliver more messages with less researching on content. And for you, the messaging would be much more clear.
c. We need to find a way to make it more “expensive or painful” for journalists to be on the side of big pharma. Right now, if they take the messages from big pharma they get the rewards from them with none of the responsibility. I think if we made a web page called “journalists encouraging autism” or something like that (with negative connotation) and we start adding the links to their articles and talk about how they are promoting more autism, eventually they may think twice about what they are writing as we are not going to forget who they are. I saw Trino Tsouderos evolution into prOfits best buddy. It still drives me crazy…
d. Once I thought about a game called: 6 degrees of freedom from big pharma (like 6 degrees of freedom from Kevin Bacon). The idea is to find how all the vaccine pushers are within 3-4 degrees of big pharma. If we could popularize such a game it could win us a huge battle in the world of misinformation (people would really start understanding how everything revolves around the money of big pharma).
2. We need to make the US a place where our doctors can explore new ideas with our children without fearing about what happened to dr. Wakefield. So, this takes us back to my priority 1.
3. We need to get many more politicians on our side and for that, again, we need to succeed on number 1. And then we need to get the help of the politicians to help us stop the funding from big pharma into the CDC and FDA. I think that is a huge MUST. But we won’t be able to do it unless we win number one first. Which is why we need to change the social perception on vaccinations. Learn from what the LGBT movement has accomplished. We could certainly learn from them…
4. Another topic is a study of vaccinated vs unvaccinated children. This is another important area of need. And we should do crowd-sourcing for it. I think we need to identify the doctors and statisticians that can help us set up the study (so that it is really tight and big pharma cannot dismiss it). We can get the money through parent supporters like myself. But we could use crowd-sourcing for many other things if we could just identify the areas of priorities.
I do realize that this is a very long and harsh email. I hope you all read it though and I’m writing it because I don’t know how else to make some progress on our battles. I’m just the mother of an autistic child. But I’m sick of our inability to get the message across that vaccines are very dangerous. And for starters, this is how I have decided to contribute to the cause… As always, I will offer my help. And I hope you work with Tim Bolen and his people. By the way, you need to open the doors to Jake Crosby again. He still represents what our children could be. He deserves all our help and support.