From: Ginger Taylor, M.S. of AdventuresInAutism.com
To: The Greater Autism Community
For just over a month I, and many others, have been writing about our concerns over the way Autism Speaks has been using its considerable resources. During its two year existence, funds have been directed toward projects that yield little improvement in the quality of life for those with autism and AS has reportedly shown an unwillingness to cooperate with, or even acknowledge the contributions of, all but a few large autism groups. This action is in direct conflict with the public image held out by AS that they listen to all those in the autism community and that they wish to speak for the autism community.
Because Autism Speaks is raising tens of millions of dollars a year from the public based on their claim that they are serving people with autism, they must be held to account if these funds are not indeed being spent on projects that serve autistics.
Thus far, the only response from anyone at Autism Speaks has come from Jon Shestack, founder of Cure Autism Now and board member of Autism Speaks. Mr. Shestak has posted a public letter stating his earnest intentions, asking for restraint and patience in criticizing AS to give them a chance to respond on the merits, and calling on the board of AS to do some self examination to see if it is time for a change in direction. I believed that his public stance was both reasonable and admirable, and I committed to waiting to hear from AS.
After a week, during which Mr. Shestak stated his intention to respond to my open letter to him, the silence has continued. It is rumored that AS has no plans to comment on the issues that have been raised because they believe that ultimately the controversy will not cut into their bottom line. I do not know if this is accurate information, but it may explain the deafening silence from AS.
In light of this, I am proposing that those in the greater autism community, those who have not been invited into the “Big Tent” that Autism Speaks has stated that it wants to be, express their concerns and frustrations directly to Autism Speaks in one concerted effort. For the next two weeks I will be collecting letters from those in the autism community, both from individuals and organizations, who wish to directly question AS on their direction, methods and actions, and who wish to make specific requests of them. I will be delivering these letters to Autism Speaks under one cover letter.
If you would like your letter to be included, here are the requirements:
- Your letter to Autism Speaks be in good faith. This is not an opportunity to vent the frustration that many of us have, but to open a constructive dialogue and attempt to get real answers and action.
- Your letter to AS be specific. List specific complaints and specific actions that you want taken. In my letter to Mr. Shestack I asked, “… if we compile a list of hard questions that we want answers to, a list of “awareness” messages that we want circulated, a list of service projects we want undertaken, a list of legislation that we want lobbied and a list of research that we want funded, will the AS board give us open, concrete answers and actions, or legitimate justifications where they will not?” Your letter should be such so that AS can have the chance to make specific answers and take specific action.
- Your letter to AS remain private for the time being. Autism Speaks should have the opportunity to respond privately, either to you specifically or to the group as a whole, before the letters are made public. You may not post your letter publicly until AS has had a reasonable amount of time to respond to it privately. I will announce an agreed upon date.
- Your letter must be signed and include your contact information.
- Your letter must be submitted to me at ASLetters@AdventuresInAutism.com by July 13th, 2007
It is time for those who hold the most power in the autism world to allow themselves to be held accountable to those whom they claim to serve.
Ultimately the only value in this exchange will be if it leads to improvements in the quality of life for those with autism, their families and their care givers. It is my earnest hope that this will refocus our efforts onto serving them directly.
Ginger Taylor, M.S.