June 28, 2010

Another Bad Faith Move by Autism Speaks On National Legislation

The Combatting Autism Act of 2006 expires in 2011. Corporate fat cats, autism monopoly, charitable organization, 503c3 Corporation Autism Speaks, has already written a full bill and submitted a bill to Senator Dodd's office.

What's that.... AS went ahead and put in a whole dang bill with out the input of the greater autism community? Shocked to the core am I.

Once again, AS, while claiming to represent the autism universe, tiptoes behind the back of our community to write legislation that will dramatically impact your family and mine. Autism Speaks corporate shark Exec VP Peter Bell (former worldwide marketing manager of the Johnson & Johnson drug Risperdal, you know, that drug that gives our boys breasts) has brought those same wholesome, forthright values of pharma marketing to the world of autism. *

I sent the following request to AS yesterday:

Subject: Request for a copy of your Reauthorization of CAA bill
Date: Sun, 27 Jun 2010 19:00:57 -0400
From: Ginger Taylor
To: Peter Bell , Geri Dawson , Mark Roithmayr

Peter, Mark and Geri,

It is my understanding that Autism Speaks has drafted a CAA reauthorization bill and submitted it to Senator Dodd.

Previously, despite claiming to be a big tent organization, Autism Speaks has used their position to circumvent the larger autism community in order to achieve their own agenda. I see this as yet another bad faith move to bypass autism families to get a new CAA that favors AS and its narrow goals.

Will you release the current copy of the CAA bill that you are working on for Dodd? Will you be inviting other autism orgs like NAA, SafeMinds, Autism Action Network, ARI and TACA to offer input on this bill? Will random autism families or adults with autism be able to collaborate on this, or is the fate of hundreds of thousands of people effected by autism in the hands of three or four people at AS who are just about consolidating their power and protecting their unjustifiably large salaries?

AS is charitable org that raises millions of dollars by claiming to represent the autism community. As such, I believe it is incumbent upon you to be transparent in your CAA dealings and release this draft to the autism community (as it will effect ALL of the autism community). Any refusal to share the bill that AS has already submitted to Dodd should be viewed as highly suspect at best.

If you choose not to release this immediately, then please provide a reason for the back door negotiations being kept secret from those whom you claim to be serving. I plan to write a piece either way on Monday afternoon.

Additionally... please forward me a copy of your 2009 990 as it is not listed on Guidestar and I don't see a copy of it on your web site.

No response.

I can only imagine that it has the very best interests of those with autism in mind, even thought the bill they just pushed through in NY, to the loud opposition of others in the autism community, and to the cheers of the insurance industry, is already hurting our kids. John Gilmore of Autism Action Network made this comment on their recent NY activities:

"In NY Autism Speaks turned a new corner, in that they are now backing legislation that will take away what little health care coverage we have and effectively slam the door shut to access in the future. We have already received a report from a parent in Westchester county who was told by his insurance company that because of the new law (the Governor hasn't even signed it yet) payments for speech and OT will be discontinued. This is exactly what we said would happen."

Does AS work for people with autism, or are they a front for insurance groups and pharma? Did AS actually write the text or were the insurance or pharma lobby party to its creation? Does it include vaccine research? I think we all know the answer to that last question.

I encourage you to call whatever autism group you belong to, large or small, and ask them what the plan is for getting a good bill to the floor.

I would also encourage you to stop giving $$ to Autism Speaks. They are starting to seem to me more like those charities portrayed in the American classic, "Death to Smoochy", rather than one that actually improves the lives of the people whose faces adorn their fund raising posters, and whose difficult stories make them so many millions.

And if you are in NY, you might wanna call the governors office and ask him not to sign AS's anti child, pro-insurance company "autism" bill.

With that I will re run this little ditty that someone put together from their 2008 tax form about where their millions go.


I am told that Peter never worked on risperdal, but that he worked on analgesics like tylenol and motrin. Which of course is much bigger problem as Tylenol is believed to be a player in autism causation as it impairs liver function... the liver function that might be needed by a baby who has just been vaccinated with aluminum or mercury containing vaccines to process said chemicals out of the body before they can cause neurological or immune disorders.


Thomas said...

Thanks for this, Ginger. I, along with you, won't hold my breath on awaiting a response. My view of AS has taken a complete 180 within just a few short months. Such a shame that the Wrights have allowed a potential powerhouse for our families to turn into another "lip-service" advocacy organization. At this rate, the ND camp will be singing the praises of AS, a stark contrast of how they felt about the former "Cure Autism Now' organization. What a shame...

jonathan said...

The combating autism act is a joke, since Stephen Shore and Ari Ne'eman are the autistic public members of the IACC, created out of the CAA, and they are both opposed to a cure for autism.