I’m an individual with an autism spectrum disorder that wishes to bring to your attention, problems with governmental autism policy, specifically with the Interagency Autism Coordinating Committee. This committee conducts policy recommendations for the federal government. The CARES act mandates that at least two individuals purporting to be on the autism spectrum are appointed as public members. So far, seven individuals who are opposed to curing and treating autism have been appointed, who believe in a philosophy called neurodiversity which purports that autism is not a medical condition, but an alternative form of brain wiring. Zero pro-cure, anti-neurodiversity autistics have been appointed as public committee members, though two have been nominated and turned down. I think this is totally unfair and it is not within the spirit of the law as the CARES act states that the viewpoints of committee members should be fair and balanced.
Furthermore, the two current autistic committee members, John Elder Robison, and Samantha Crane are very functional people who appear to have no overt disability. In fact, John Elder Robison has stated he has no disability. Samantha Crane is a very successful Harvard trained attorney.
Apparently, a person who purports to be autistic who wants to serve on this committee only has to self-identify and not provide any proof of a professionally obtained diagnosis. I asked them about this on social media and John Robison claimed that I was insulting him. Samantha Crane stated that there was no reason she should have prove her autism and made the false statement that she was not appointed to the committee because of her autism. Though Ms. Crane said she’d release her medical records to the IACC upon request, but not to the general public.
I write you this letter, urging you to introduce legislation to amend the CARES act to require public members of the IACC with an alleged autism diagnosis produce proof of professional diagnosis to the committee and the general public, and explain to the stakeholders in the autism community how autism has impacted their life and disabled them.
I wrote to the IACC via their invited public commentary that I felt the autistic public members should provide proof of a professional diagnosis and explain how in spite of their apparent functionality, how autism is impacted their life and how they are the least bit similar to the 99.9% of autistic individuals they serve and state they represent.
Afterwards, Ms. Crane, on social media, made the false statement that I was “told to mind my own business” and that “I was harassing the Interagency Autism Coordinating Committee” for writing polite and invited public commentary that she did not happen to agree with.
I don’t believe that people who are stakeholders in the interest of a public committee should be spoken to this way, on social media, or anywhere else. I’m hoping you can write the acting Secretary of HHS, and the Director of the National Institute of Mental Health and deal with Ms. Crane’s absolutely unprofessional behavior. I also feel the house and the senate should investigate the IACC and how the Department of Health and Human Services is vetting public members of the Interagency Autism Coordinating Committee and also introduce legislation to change the law, requiring autistic committee members to provide proof of a professional diagnosis and explain to stakeholders how their autism handicaps them. Your help in this matter is appreciated
Here's Ms. Crane's tweet:
Moreover, you've already complained to IACC and been told to mind your own business. You are free to keep harassing them if you want, since that is your First Amendment right. But you're not going to get anywhere bothering me on Twitter about this. No means no.— (((Sam Crane))) (@Samanticka) January 18, 2018
For those who feel as I do, I urge you to write the congress, the department of HHS and the president, and send comments to the IACC about this and maybe we can do something about this.