Opinion by Consumer Advocate Tim Bolen
This is the tenth article in a series focusing on the fact that Autism is a social issue that could have been, and should have been, solved a long time ago.
In my “Calling For Batman…” article, I pointed out a pattern of poor tactics, and lack of a general strategic plan, by Autism Leadership. I mentioned a “Summit Meeting” between Autism Leadership and key members of the Health Freedom Community. I said:
“I offered to bring to that meeting at least ten significant, influential, members of the Health Freedom Movement to assist in the research and preparation of that Plan. I offered to coordinate the situation analysis heading toward that Plan using a Crisis Management situation analysis.”
I have been in contact with a good many of those “significant, influential, members of the Health Freedom Movement” I offered to bring, and the consensus is “Yeah, let’s do this…”
But, on the opposite side of the table, the Autism Leadership, there is only emptiness. I haven’t heard a word. In fact – the opposite. There is actually a group that wants to prevent a “Summit Meeting,” claiming that THEY have all the answers, and they have no intention of even being in the same room with any others, neither in the Health Freedom world, and certainly not the Autism world.
I kid you not…
I have a whole story coming up about this particular group. It is called “Treachery…” I had arranged, at their request, access to some funding for their project. Once they got it, they turned on me, and everyone else. The story sits here on my desk for a while until my Irish Temper cools down. But, be assured, I do not suffer betrayal well… Trust is trust, no matter how you slice it.
I feel an obligation to warn all others about these people. And, I soon will.
Wrath is wrath…
There was an “Almost…”
Age of Autism almost discussed the lack of focus and organization in Autism Leadership issue. Almost. I suspect, like me, they are getting bombarded with commentary on this subject. And, that’s a good thing. Dan Olmstead, the editor at Age of Autism, sent me a copy of an email addressed to a woman who had quite a bit to say about her frustrations with Autism Leadership. Dan’s short, but very clear message was:
“since you haven’t said otherwise, i take it you’ll be fine with me publishing this e-mail verbatim? best, dan”
The writer’s response was:
“I was not trying to do a public criticism, but if you see any value in publishing, absolutely…
I think it will be good to get some heated discussions going. I don’t think I can take many more stupid articles in the newspapers…”
But, Age of Autism decided not to run it. I think, once you read what this Autism mother said, you will see why they did that. Below are some excerpts:
“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:
- 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:
- 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.
- 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.
- 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…
- 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).
- 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.
- 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…
- 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.
Yeah – they didn’t run that, did they?
Just so you are aware…
Here is another response to my articles you should read:
I gave you an email response. I agree with much that you have to say, and I’m hoping that you step up and take care of it. I’m with the autism-media organization, and we did our best to get the info out there free to parents/medical professionals/educators.
We are not paid for what we do, and we also are raising kids with severe autism… and it’s difficult to do what you are saying should be done.
We’ve made specific goals as to what we want to do as an organization, and have run into many roadblocks. It is not our plan to call for batman, but to educate and get larger amounts of people aware of the issues – so they can make educated arguments for appropriate health care, education, personal rights, etc.
I agree that self-reliance is critical – but when they threaten to take my kids away because I went to an ER with a child who is unvacccinated, and I’m in liberal Illinois…. I have so many battles to fight on a daily basis.
How can I take on a broad goal such as…. requiring the school districts to hand out info on dangers of vaccines to all parents by 5 years… when everyone knows that the schools get $$ per vaccinated child, as well as hold to the firm belief that vaccines are protecting the individuals and general education community. I can’t even imagine a 5 year plan that would bring us any closer in the current political community – where required vaccine uptake is the only issue agreed on by both republicans and democrats.
If you’ve got it figured out, please step up! I’ll jump on board! I’d love to see the breakdown of your goals… beccause they are all desirable. I don’t see them as realistic, but I’ve not seen the entire set-up. I’ve only seen the your criticism of the few organizations that tried to some something right – the best way they knew how.
I’m sure they’d all jump on board if your vision is awesome, understandable, and you don’t insult their efforts while raising broken kids in broken homes…
Can’t you see that these are the people who would join you if you would take a better angle?
It seems that your remarks are a inflammatory in a way that creates enemies of those who would follow you. You may have those ultra-strong supporters who will support you no matter how many enemies you make – but it seems like you could use support.
Did you know, that some of the congressional testimony is the only way I could reach certain doctors, social workers, and school administrators?
Thank goodness for those. They were far superior to an angry online blog.
Please! I beg of you not to make all autism leaders the enemy. Lead us!
Be someone that people will rally to and follow – instead of someone else who is loud and critical but does nothing for us.
Julie was concerned that I would mock her for saying this, so she was hesitant to let me use it.
No, I’m not mocking Julie. What I am doing is to let my readers read between the lines. Julie, and the others, have developed a mind-set that says “There is almost nothing we can do.” When you get into that frame of mind then you really cannot solve problems.
The Autism world needs us very much, my friends.
Tim Bolen – Consumer Advocate