January 20, 2017
Dear Mr. President:
I’m a sixty-one-year-old man with an autism spectrum disorder. This disability has made my life very difficult. It has prevented me from ever having a girlfriend, I’ve had very few friends and it has greatly impaired my ability to make a living. I worked sporadically between 1979 and 2006 but was fired from more than twenty jobs. Because of this, I retired at the age of fifty-one. I was denied social security disability insurance and am supported by my elderly parents who might not be around much longer.
I had to go to special education schools for eight years and was expelled from a mainstream school. I barely graduated high school and then barely graduated college. I have to do a self-stimulatory behavior during the day which impairs me from being able to do the writing I want to do and it makes it hard for me to get anything done. I have horrible fine motor coordination and have nearly illegible handwriting. I have a very loud voice, repeat a lot of the same things over and over again and people find my behavior offensive. Compared to most others on the autism spectrum, I have it good. In addition to supportive parents, my affliction is mild. There are others who can’t speak, injure themselves by banging their heads into walls, are incontinent, and need life-long care. I long for research to be done into how people with my disability can be helped. Ultimately, I’d like a cure for autism, though I realize that’s unlikely to happen in my lifetime.
The reason I write you this letter is because the executive branch of the government, namely the secretary of health and human services who will serve under you, appoints members to the Interagency Autism Coordinating Committee which advises the government on autism funding and policies. Some of the past and present appointees belong to an insidious movement called Neurodiversity. These people do not believe that autism is a disorder, and, in some cases, do not believe that it is a disability. They make the untrue claim that acceptance and the correct accommodations will resolve the difficulties people on the autism spectrum have. A number of these individuals have been appointed to posts in the federal government and make decisions on how American tax dollars are allocated for autism matters. They are opposed to curing autism or doing things that will really benefit autistic people. I don’t believe these people should be involved in making decisions using American tax dollars.
One of these people is named Ari Ne’eman. He heads a non-profit organization called the Autistic self-advocacy Network. Since the CARES (formally combating autism) act was made law by congress, his organization has had a chair at the Interagency Autism Coordinating Committee. In the past he’s stated that he does not believe that autism is a disability or that if it is a disability it is because of societal constraints. He’s barely afflicted by his alleged autism if at all. He has implied that people who want to cure autism are morally complicit with murder. He has stated that the solution for autistic unemployment is to eliminate social pleasantry as a hiring criteria on the job. He has also called you a fascist saying he would not work with you for that reason. Therefore, I don’t believe that he or anyone representing his organization should be appointed to the Interagency Autism Coordinating Committee.
Another individual who has served on this committee multiple years is John Elder Robison. Mr. Robison has stated that there is no need to find a cure for autism. He has stated that treatments should only be left up to the autistic person and that parents should not have any say in the matter of the health of their own children. He has stated that parents who seek treatments for their children often do so as a matter of convenience and not to help the child. He has made the claim that no one had heard of autistic people in the nineteenth century because they blended into the general population due to the type of society it is. He also has made the insensitive and ignorant comment that most autistic people don’t suffer from autism but rather from depression and anxiety. I feel these statements trivialize my disability and I don’t feel that Mr. Robison should be on any government committees or supported by or consulted by the government on any autism-related matters.
Noah Britton is another individual alleging to be on the autism spectrum who has been appointed to this post. He has compared parents who want to help their children with members of the Ku Klux Klan. He stated that he represented thousands of persons on the spectrum who don’t want a cure. He has made a mockery of a U.S. government meeting by wearing a raunchy shirt with the letters “my body my choice” emblazoned on the front.
Another individual named Matt Carey has also served on this committee and he has advocated for the ideas of neurodiversity.
I don’t believe that persons such as these or the organizations they represent should have any involvement in governmental policy making related to autism. And I am writing this to you in the hopes that you can do something about it.
Though there is a law enacted by congress authorizing this Interagency Autism Coordinating Committee, these people are appointed by the executive branch of the government, namely the Department of Health and Human services. I am writing you this letter urging you and your HHS secretary designee, Tom Price, not to appoint these people to the IACC or preferably anyone else to the IACC. There is no other medical condition other than autism where they have lay people who give input to the government or policy and science matters. For example, there is nothing like this for diabetes. We don’t have people like these serving on FDA panels to decide which antibiotics are approved just because they or their loved ones have had an infection. Ergo, there is no reason for something like this in autism either.
These members of neurodiversity only undermine and trivialize what is a horrible medical condition. I will forward a copy of this letter to Mr. Price once he is confirmed by the senate to his post.
Your consideration in this matter is greatly appreciated,