on regretting my autism diagnosis 4 years later.

First and foremost, this won’t be a discussion about the politics of autism, whether or not self-diagnosis is real, or any other topic related to the social shift happening within our discussion of autism, and the communities and nuances within it. It’s just my feelings.

When I first started having mental health issues early on in childhood, I could never imagine where it would have ended. I think the signs were obvious in hindsight: terrible social integration, early occupation with special interests, inability to do anything else.

I remember when I was 12 or so, having to face the prospect of going to a grocery store without headphones and the sudden realization at the fact it seemed painful. I skipped it and attributed it to the early symptoms of teenagehood.

In November 2020, I released Aetheria. It was my 3rd app under my non-profit, and the last iOS app I have ever publicly released to date. I had made an entire life out of being able to understand the needs of people, especially those in underserved groups, and then building software for them.

In December 2020, I had received my autism diagnosis. I haven’t released another app since, as of writing in January 2024.

Most of the questions and things I faced after were:

“You are definitely autistic, with 100% certainty” — My doctor

“The doctor said you were on the spectrum, not autistic. Maybe you should go back and live with your mother because I can’t take care of you.” — From my dad

“Why do you think you have autism?” — Family members

“You don’t have autism, I’ve worked with kids who have it” — My dad’s new wife, who shoots daggers to my dad every time I mention it.

“Women can’t have autism” — Everyone online

“That makes a lot of sense” — Bosses I confessed to after I started randomly crying post getting ganged up on without warning or preparation

“I knew it. You didn't know?” — Friends who had autism

As much as the autism community is incredibly forward thinking, the rest of the online spaces still uses autism as a synonym to mean mentally disabled. The others are fighting over which brand of Covid vaccine has the most autism, courtesy of our autism spokesboy, Bill Gates.

I struggled immensely post diagnosis, mostly because no one believed I actually had autism. My best friend at the time, someone in the medical field, told me because I held eye contact online that it couldn’t be. Later, they stated, “It’s a completely different thing to hear about it than to see it in front of your eyes”.

Before we started the diagnosis, my dad begged my psychologist, someone who was the most qualified person in the state who specialized in psychiatric complex medical cases after running psych at Oregon State Hospital, to debunk my idea that I had autism because he feared I was inventing it.

I still remember sitting in the stuffy room, trying to force myself to make eye contact and failing. Then, looking at the floor when my psychologist mentioned that kids on the spectrum could teach themselves how to read young, something I did, before my dad gasped “oh my god”, in the same way you do when you get the phone call that someone in your family had been in a car crash.

I wished, probably more than anyone I knew, that I didn’t have autism. Not because I thought it was a bad thing, but because most other people did, (like my mom who believes that autism is the result of being a medical guinea pig and that it can be cured with Mineral Miracle Solution), and the fact they did splashed back onto how they treated me.

My notes app entries from the time hopefully provide some insight, which can be reduced down to ‘if I have autism I am unredeemable and I should just kill myself’.

No one prepares you for the diagnosis, because you are literally handed a piece of paper that says you’re shit at integrating into society. And the rest of your life is some combination of trying to accept that, and trying to convince others to accept it.

When I realized I had autism, unescapably, and it wasn’t an imaginary illness or thing I had transposed out of thin-air, I lost my faith in myself. My diagnosis told me what I thought I needed to know: I was weird, I didn’t understand others, I was an essentially a social alien in a world that moves you forward based on your social cohesion.

In Fall Out Boy’s song, Golden, there’s a line that goes “All of the mothers raise their babies to stay away from me”, that encapsulates the diagnosis of autism in the anti-vaxx era.

Now with my two anti-vaxx parents, the reduction of a complex developmental disorder to a complete misunderstanding of how autism forms is at the center of most of my conversations with the parent I have left. Even without my mom in my life, every vaccine conversation with my dad ends somewhere with, “do you think if you hadn’t gotten XYZ that things would have been different”?

Despite my pleas to not talk about it, it doesn’t stop the fact that I know what’s unsaid. Autism is a curse most people and their kids can avoid if they don’t get jabbed, but not me. When you live your life in that shadow, how can you feel good about yourself?

If central to what you are is something everyone doesn’t want, what does that say about how they see you?

Autism is terrible, it’s a ‘vaccine injury’, and it’s worth going out of your way to avoid. And when you get diagnosed with the thing most people are trying to avoid, the thought transfers that you (if they even believe you).

I stopped building. Partially because I had a lot of shit going on, but mostly because there was a piece of faith lost in myself, in my ability to be self-aware, and in my ability to feel like I could effectively serve the people I wanted to.

I’m still looking for that faith.

My co-founder Valkyrie and I walked through New York tonight, and I detailed and confessed my sins to her as I often do, looking for repentance and a hint of understanding.

And instead, she rebuked all of my points. “You’re so good with people”, she says with the shining belief she says about most things, an eternal optimism that rivals nuclear fission, as I confess to her about my fear about the ‘being bad at people disorder’.

I ramble more, about Elon Musk, how partially I hate him but mostly I’m envious of him because I’m enamored with self-doubt in my ability to perform with conviction even given evidence and how he is able to continue in spite of others lack of conviction in him.

How I envy people crazy with self-delusion because I’m so self aware and morally anxious that even Chidi from the Good Place would get annoyed upon being able to see my inner thoughts.

How, even though when I ask ChatGPT to make me a bio it says I’m known for my innovations in helping people, I still don’t feel like I trust myself enough to understand people to help them.

She says she doesn’t notice the autism, and doesn't think anyone else does. I wish I was as ignorant to it as they are.

I would be lying if I said being diagnosed made me happy, long term. It gave me clarity, but that clarity came at the cost of reckoning with everything I loved.

I don’t think my reproductive rights are safe, given that the US has separate Supreme Court cases dealing with people who are sterilization and those who are ‘mentally incapacitated’.

Given the state of abortion rights in the US, being in the “mentally incapacited” group an easy target for anti-abortion activists to target next. The conversations, specifically the arguments JK Rowling makes about autistic kids being ‘unable to consent to transition’ leaves me with the undertone of dread, wondering what rights I could lose to access any medical care in the line of crossfire.

Given that my genetic mutation makes having kids and being under anesthesia particularly unsafe for me, I found consolation in adoption in my future, only to realize having an autism diagnosis could be a disqualifier. Immigration into some places is also impossible for me.

The diagnosis has not given me any accommodations, or access to welfare or other programs that would be helpful. Mostly, because most of the welfare programs that would do anything for me require me to be mostly poor, and to never marry if I were to keep the benefits.

I’m holding out hope for an FDA direct loan to become a homeowner soon, but I don’t think the weight of potentially not being allowed autonomy over my body and being divisive to everyone who knows about my disorder is worth a 200k mobile home in the middle of nowhere.

But Switzerland would help me kill myself because of it, so I guess that’s nice of them.

Although my autism diagnosis has made a lot of things make sense, it’s also forever tangled me in a perception thrown on me by others, one that’s impossible to unravel myself. I’m slowly, but surely trying to regain trust in my work, in my ability to listen.

Whenever I do something socially wrong, I take it to Valkyrie or my boyfriend as an autopsy: if you see where I hurt something by calling it out myself, you can’t hold it against me. I hold myself to a greater social standard than most neurotypical people hold themselves. I do whatever I can, in any way I can, to prove that I am a ‘good autism’, not that I believe there’s such a thing but because everyone else does.

I keep on opening Visual Studio code to a finished codebase that I can’t seem to ever get around to releasing. Not for lack of moral panic or self-flagellation, but more because I’ve convinced myself it’s tainted by my inability to recognize if it’s needed. That the code is fine, but somehow it’s the fact I made it that made it unreleaseable.

I ask Noah if I’m annoying. He says no. I ask him if I stand out, and he says, “Yes, but in a good way”. He’s thinking about how much he loves me and the bright light he sees me in. I’m spiraling about the fact he said I stand out at all.

I’m working slowly through it, harder than I ever have in my life.

Sure, I can hide it day to day, and can act in front of VCs and can get on a stage and speak in front of 12,000+ people no problem. I can develop an entire AI caregiver for people with long term disabilities in a week myself.

But at the end of the day, there’s a piece of paper with my name on it. Autism spectrum disorder, with a side note written by my psychologist “shows unusual symptoms of autism”.

A paper used to describe me, but also to disenfranchise me. I do know, which is what I wanted. But sometimes, knowing too much is worse than knowing nothing at all. 33/100 functioning.

Amanda Southworth. Autism Spectrum Disorder.

Once you know what the world thinks of that, you’ll never want to know what the world thinks about anything you do, ever again.