Sunday, May 10, 2009

A letter to my congressman

I have written the following letter to my congressman:

Mr. Congressman:

I am an individual with autism in my early 50s who has lost multiple jobs and is in the process of applying for social security disability insurance. I long for a cure and a way to prevent people from becoming autistic in the first place if this is possible.

The reason I write you today is that I am concerned that the Combating Autism Act which congress passed in 2006 is not being applied in the spirit in which the law was originally intended. The purpose of the law and the subsequent creation of the interagency autism coordinating committee was solely to suggest ways that research dollars could be spent with the only intended purpose of finding ways to cure and prevent autism. This is not happening. There is currently a group called the Autistic Self-advocacy Network that often lobbies their agenda before the IACC. They subscribe to a philosophy called neurodiversity, which states that autism should not be looked upon as a disorder that needs preventing or curing, but as an alternative form of brain wiring. They have lobbied the government for a moratorium on genetic research. They also lobby for studies on vocational training community housing as opposed to institutionalization and even more trivial things such as the the nonmalicious use of slurs in movies or this ransom notes campaign in which language offensive to them is used. Genetic research may be our 'ace in the hole' for someday preventing this horrible tragedy to other children and enabling them not to become crippled and sick with autism.

When congress was debating passage of the combating autism act a few years ago, these people protested the law and tried to prevent it from passing congress. After it was passed, they unfortunately took advantage of a law that they don't believe in to present their agenda to the government. I do not believe this organization should be allowed to present an agenda before the IACC. It is not fair to the organizations such as Cure Autism Now (which since passage of the CAA has merged with autism speaks) who lobbied for this law and other private citizens who long for a cure and prevention of this horrible affliction to allow the autistic self-advocacy network a voice at the table or anyone else who is using this law for other than its intended purpose of finding ways to cure and prevent autism.

I was wondering if you could take some sort of action to prevent these people and others like them from testifying before the IACC. Or perhaps you could introduce legislation amending the CAA so that they would not be allowed a voice in the process.

Also the combating autism act stated that one of the public members appointed to the IACC must be an individual with autism. Stephen Shore, the current public member with autism, is opposed to a cure for autism. I was wondering if when his term expires or possibly even sooner if you could instead appoint a pro-cure autistic as a public member. Your help in these matters would be greatly appreciated.

If any other american citizens happen to read this and they agree with me on this, I urge them to contact their congressman also and to try to do something about ASAN's actions and hypocrisy. I have started with my congressman and I may also write my U.S. Senators and president Obama as well. I realize this is probably about as effective as writing a letter to Santa Claus but at least I feel that I tried my best to do something in spite of the fact this blog does not get a large amount of traffic.

To the "Autistic bitch from hell" and my other neurodiversity detractors. I have now written something else, so perhaps you can go ahead and once again make a donation to ASAN in my name. if you think your childish response to my letter to newsweek as well as John Best's and Jake Crosby's letters will discourage me from my activism you are sadly mistaken. Hopefully we can mobilize enough pro cure people to do something about your misguided agenda and if you keep your word you will have to keep donating to ASAN until you go broke.


Anonymous said...


This letter reads more like a personal vendetta than it does as an advocacy for your point of view. It makes you look small and reactionary.

Jake Crosby said...

I liked this response especially:

"and if you keep your word you will have to keep donating to ASAN until you go broke."

I was especially flattered to see that she donated $25 because of the last post I wrote for AoA. She better be prepared to donate a lot more if she plans to keep that up. Had she done so since I started contributing she'd be out $125 and counting.

Jake Crosby said...

*correction: $150 and counting.

jonathan said...

no personal vendetta against anyone. I just wrote what I feel U.S. public policy should be towards autism. This is also the policy that congress enacted in 2006 and that the majority of voters with an interest in autism wanted, otherwise congress would not have passed the CAA, but you are entitled to your opinion.