"Diagnosis is a Privilege."

Is it really?

Robert F. Kennedy Jr.

"Diagnosis is a privilege.”

How often have you heard an Autistic adult who came into that identity later in life use those words?

I hope that RFK Jr's plan to create a registry of all diagnosed Autistic individuals settles once and for all how much this is not the case.

The choice to access a diagnosis is a privilege. People who are able to mask their Autism and did not have diagnoses forced upon them as children get to decide whether to identify themselves as disabled publicly or in the eyes of the state.

They get to choose for themselves whether the possibility of accommodations and greater social acceptance is worth the risk of being viewed as legally incompetent, being deprioritized for ventilators or organ donations, being denied immigrant and refugee status, and losing the right to make decisions about their body or money -- all rights that Autistic people have been very much denied in countries all over the globe, including the United States long before Trump took office.

Visibly Autistic people, nonverbal people, intellectually disabled people, and those who cannot mask have never had the option to obscure that they are disabled. They've never been granted the right to choose how they self-identity, and to whom they will disclose their disabled status. Their lives have already been treated as less valuable for a very long time, and when RFK Jr uses this registry of Autistic persons for whatever nefarious purposes that he has in mind, it is those hyper-visible Autistics who will be targeted first and suffer the most.

Hans Asperger created a separate psychiatric label for his "little professor" Autistics in part to spare them from the eugenicist Nazi regime. His argument was that Autistics who could speak and function intellectually at a very high level deserved to live because they were useful to society. We can argue that Asperger’s choice to highlight the unique gifts and abilities of certain Autistics may have saved their lives, but he also collaborated with the Nazis to send intellectually disabled and higher-support-needing Autistics to their deaths in clinics where they were starved and poisoned.

Today, Autistics who can speak and function intellectually at a very high level continue to make the same argument that Asperger did -- that some of us can hold down jobs, live independently, and "contribute" to the world, and thus we are deserving of life. These are also the Autistics who got to make a choice about whether or not to ever pursue diagnosis, and whether to share that information with anyone else up until this point. Infuriatingly, many members of this group claim that masked Autistics somehow have it harder, because of the inner turmoil of our difficulties not being seen.

There is great peril to giving sensitive information about yourself over to the state. Trans thinkers like bioethicist Florence Ashley have been issuing warnings about this as it relates to the X gender marker for a long time. There is no reason for the government to have records on individuals' gender minority status. It’s not information that is used to treat the person in a more respectful or gender-affirming way, or that meaningfully alters their status within larger systems — almost every legal and medical structure that exists today still places every person into a binary male or female category. All that an X gender marker does, then, is flag to the government that a person is a member of a highly targeted minority group. They truly do not need that information.

Passports only began including gender markers in the 1970s, when conservative anxiety about the sexual revolution and androgyny in young people’s style of dress led to lawmakers moving to more strictly categorize people by legal sex. It has never been liberatory for people to begin handing over information about their gender identity to the government. Giving more personal information over to the government only expands the aspects of human life that the it can surveil, and potentially control.

The Culture War Over Sex Markers on IDs Is Causing Chaos. Here’s How We End It

I have been arguing for years that disabled individuals should take pause before deciding to hand over incredibly sensitive information about their own disability status to the government. I have pointed to the fact that Autistic people have been denied the right to move freely between countries, to maintain custody over their children, to handle their own finances, to exercise body autonomy and access medical care, even to flee from war zones because of their disability, and suggested that those of us who have the freedom to choose how we identify not rely upon medical or governmental authorities to do so.

And I have been inspired in this by the pre-existing norms of the Autistic self-advocacy community, which has long recognized that we all sit under a wide umbrella that includes a wide array of overlapping disorders and diversities, both diagnosed and undiagnosable.

But right now, my greatest fear is for those among us who never got to choose whether to seek a diagnosis for some extra test-taking time or personal validation.

The Autistic people that RFK Jr has fearmongered about are the ones without jobs or full legal rights, who have long been denied their voices or their ability to self-identify. Those are the people that mainstream society fears. They are the ones that will be first to be sterilized, incarcerated, or exterminated. If any of the rest of us are castrated or thrown into camps, it will be due to the fear of us producing children who are that visibly disabled and dependent upon others.

Meanwhile the Elon Musks of the world will glory in their Asperger's diagnoses, claiming that their disabilities make them more cold-bloodedly rational and intelligent than anybody else, more worthy of reproducing their genetic material yet also uniquely immune from criticism -- wielding the identity of their choosing only as it suits them.

I worry for the people who only ever got told from the outside what their identity was, and never had any say over whether it was a good or bad thing. There is no privilege in being othered, forced into corrective therapies since childhood, and in being the specter that haunts national hate movements.

Many of us masked Autistics have lived our lives in fear of ever being seen the way visibly Autistic people are. We have done everything in our power to avoid taking on their second-class status and keep being seen as human. Even in our advocacy we do it. "We feel empathy!" "We can be competent!" "We have jobs!"

What about those who can't?

Now that some of us can scurry back into the shadows of internalized stigma to spare our skins, what will we do for those who have no such choice?