I have written the following to my congressman, senators and president Obama. I realize this is probably about as effective as writing a letter to Santa Claus but I have done it anyhow. I am going to share the contents with the readers of autism's gadfly:
Mr. Congressman: I am an individual on the autism spectrum now in my mid 50s who longs for a cure for autism. I realize that this is not realistic in my lifetime. I am celibate. I have not worked in over 3 years and I have been unsuccessfully trying to get on disability for nearly 3 years now. I constantly talk loudly and make funny movements which draws attention to myself. I have very poor fine motor coordination and can hardly handwrite. I have various phobias. As a very young child I was almost completely nonverbal. I have been constantly fired from jobs (probably about 20 now) and had to give up working. i am very frustrated by this disability.
The reason I write to you is that I am very concerned about various autism policies that are now put in place by the federal government.
I am concerned about the creation of the combating autism act and the subsequent creation of the interagency autism coordinating committee. Though the law has stipulated that there must be at least one autistic member, there are currently two members, Stephen Shore and Ari Ne'eman. Both of these individuals have expressed opposition to curing autism in spite of the spirit of the law. Both of these persons are barely affected by their autism if at all. In fact Ari Ne'eman has stated that curing autism would be morally reprehensible. He has advocated a moratorium on all genetic research. Genetics may be in fact the 'ace in the hole' for finding future treatments or at least ensuring that future generations of children wll not be affected as I have. I do not believe either of these individuals should serve in the government in any capacity on autism related matters. I urge you to introduce legislation expelling these individuals from the IACC or introducing legislation to abolish the IACC and/or voting against reauthorization of the combating autism act when that comes up.
John Elder Robison, is another individual who has expressed opposition for curing certain autism disorders other than his own, yet he can be a best selling author, get a $100,000/year engineering job and get married twice. These are things beyond my capacity. He is allowed to review federally funded autism research apparently only because of his incredible celebrity. I do not believe persons who express opposition to a cure such as Robison should be reviewing grants for federally funded research. The same goes for Stephen Shore who does this as well as being a public member of the IACC. I hope these celebrity review of research by those opposed to a cure should stop.
I also would like to comment on the federal goverment's funding of autism researcher Morton Anne Gernsbacher. This is a woman who has publically opposed a cure and who in fact has stated that autism is a harmless condition. I was hoping you could introduce legislation to terminate her funding from the army, air force, NIH and lastly the CDC. It is interesting that she receives funding from the CDC yet does not believe that autism is a disease.
Thanks for your consideration in this matter.