5 min read

I always figured I’d end up on some sort of government watchlist during the Trump administration, but I thought it would be because I write op-eds in a newspaper (something that foreign college students here on a student visa can be thrown into jail, for now!), or because I’m pregnant, or because I’m gay married.

I did not think the government would particularly care about my diagnosis of autism spectrum disorder level 1. But that was before the secretary of health and human services, Robert F. Kennedy Jr. (possibly the worst Kennedy, and I’m including the one who killed someone in a drunk driving accident) announced the creation of an “autism registry.”

Anyone with the slightest knowledge of history will know that when government starts making lists of citizens it is never good. There are, of course, some public health reasons we track contagious diseases like tuberculosis and gonorrhea, but autism is not contagious (if it were my whole family would be autistic by now) and arguments can be made (and I’m happy to make them!) that it’s not a disease.

Fortunately, after enormous public outcry, HHS seems to have walked back its registry goals, but given what we’ve seen from this administration so far (a complete lack of regard for personal liberty) we should probably all keep an eye on them.

Recently, Kennedy said during a news conference that children with autism “will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go on a date, many of them will never use a toilet unassisted.” If that’s the case, I’d like a refund on the $9,500 I paid in federal taxes last year, please and thank you.

I’d like to think it goes without saying but I have done literally all of the things the secretary says I will never be able to do, except for play baseball (growing up I did karate, cross-country and track). And somehow I managed to do it all despite struggling with eye contact and social cues.

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One of the reasons I’m so open about being autistic is because the majority of people being diagnosed with the disorder are children, which means reactions and responses also filter through their parents. Thanks to the lousy, narrow-minded attitudes of RFK Jr. and people who think like him, there’s this idea that autism is a death sentence or something. Parents freak out because they think their child won’t be able to live a good life. And I want people to know, they can.

I’m autistic and my life is pretty great. I’m married and expecting a baby, I’m financially independent and own my own home, I have dogs and hobbies and am on a local school committee and yes, I fiddle with my hair constantly and eat the same thing for breakfast every day without fail and can’t stand being in loud indoor spaces.

“Oh, but Victoria,” you might say, “he wasn’t talking about autistic people like you. He was talking about, you know, the other autistic people.”

First of all, if he wasn’t talking about all autistic people he should have said so instead of letting his big fat mouth flap in the breeze like a loose dryer chute. Talking about autism like a death sentence has real-world consequences. Bad ones. There have been multiple cases of parents murdering their autistic children. Other parents have had their autistic kids drink bleach as a quack cure recommended to them on Facebook.

Just a few months ago, a 5-year-old boy was burned alive in a hyperbaric oxygen chamber by a company that advertised such treatment as a cure for autism, among other disorders (according to the family attorney, this particular child was undergoing treatment for sleep apnea and ADHD, both of which have many approved treatment options, none of which is an oxygen chamber).

I’m not going to play the “good autism/bad autism” game. Or, to be more accurate, the “productive autism/unproductive autism” game. Because that’s what it’s all about, isn’t it? There’s a reason the first concern on Kennedy’s list of “things autistic children won’t do” is “pay taxes.”

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The Nazis divided up autistic people the same way. My brand of autism used to be called “Asperger’s syndrome,” after the German scientist who did a lot of early, cutting-edge research into the autism spectrum. Dr. Asperger also worked with the Nazis to divide the children he studied into two groups. One group was made up of children who, though different from their peers, could work. Nazis even thought some of their pattern-recognition and mathematical skills could be useful for military codebreaking. The other children were the ones who could not work. They were among a group called “useless eaters” and murdered by the Nazis, often in gas chambers as a trial run for the death camps at Auschwitz and Treblinka. The end of the road that begins with seeing disabled people as societal burdens.

My house is decorated in artwork from Spindleworks Arts Center in Brunswick. Spindleworks is a day program of the Independence Association, which provides services to Mainers with intellectual and cognitive disabilities. I have lifelike floral paintings, little statues of characters from the 1960s TV show “Get Smart” (one of my family’s favorites growing up), a multifiber woven tapestry/blanket that’s going in the nursery, printed dishtowels, some T-shirts and a multimedia bas-relief sculpture of a critter that sort of reminds me of Janey, in a spiritual sense.

The artists who created these pieces need more assistance in living their day-to-day lives than I do. They are also vastly more artistically talented than I am. I have absolutely zero talent when it comes to fine arts. If anyone has ever doubted that people with disabilities can create beauty and culture for their communities and the world at large, I would invite them to visit Spindleworks’ gallery.

Personally I’d much rather my kids grow up to be like Anna, Mitch or Emma than RFK Jr., who in addition to being scientifically wrong on pretty much any question presented to him is also a terrible womanizer.

Disabled people can live good lives and can contribute to their community. All that requires is a little support and creativity. Even I know that, and I have clinically rigid thinking.

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