1. United States
2. Maine
3. Letter

I am a constituent from Millinocket. I have many concerns about this administration but am writing today about one that has a deep impact on my family. The National Institute of Health is developing a disease registry for Americans with Autism. The head of the NIH has recently made some outrageous claims about people with Autism: "They'll never pay taxes, they'll never hold a job, they'll never play baseball, they'll never write a poem, they'll never go out on a date. Many of them will never use a toilet unassisted." This displays a fundamental ignorance of the existing medical science. The Diagnostic and Statistical Manual of Mental Disorders that is the golden standard of medical diagnoses defines Autism as a spectrum. Many, if not most, people diagnosed with ASD go one to lead full and independent lives. Especially with the proper early interventions and assistance. In reality, my son is one on the end of the spectrum closer to what RFK Jr. was describing. He’s now 17 with the mental capacity of a first grader. He’ll likely never hold a job or pay taxes. He’s currently in a full time assisted living facility in Massachusetts because Maine had none that could meet his needs. He’ll need to be in a facility his entire life because of his violent outbursts. My biggest fear is an encounter with the police during an episode like the recent one in Idaho where an autistic teen was shot nine times before the police even took the time to assess the fact that he was behind a fence as he approached them with a knife. Second to that, my fear is how my son will be treated as a “non taxpaying” member of society. RFK Jr has publicly championed “wellness farms” over medication for people with mental disorders. Under RFK Jr.’s leadership, massive quantities of private medical information will be consolidated by the NIH to “track” people with Autism. I have no idea what information will be collected, whether it will be anonymized or what it will be used for. Based on RFK Jr’s own statements, I simply do not trust this information will be used to benefit people like my son, let alone that it will be kept secure. Can you find out what information will be collected, how it will be used and how I can use my own agency to safeguard my son? I can’t believe this is allowable under current HIPAA regulations. Pearl Buck famously said “the test of a civilization is the way that it cares for its helpless members.” This administration is saying a person’s worth only comparable to how much they pay in taxes and wants to send those who can’t to work camps. I spend sleepless nights wondering what will become of my son under this administration.