dailyprompt-2911 – Stories That Are All True

What’s one thing you know now that would have saved your younger self a lot of pain?
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One of the things I wish I’d known as a kid was that my mother was in it to save herself. She wanted everyone around her to believe that we were the perfect family, sacrificing any and all things to fit a vision our personalities never could. By the time my parents divorced, all of the damage had already been done. Because being the perfect preacher’s wife did not include having a special needs child, even when it was painfully obvious.

I didn’t need to take the short bus to school because I struggled with my homework (except in math). I needed support because it takes everything I have to be able to focus on the task at hand. Reading and writing do not flummox me. The routine of things it takes to get ready for the bus has already run over me like a train. I am learning about myself now and it is a completely different picture than the one I was handed- one that is every bit as beautiful as the one my mother tried to create except I am not killing myself to maintain it.

I was mainstreamed so that I could only be outstanding in blips. My nervous system wasn’t regulated, so I got a lot of, “you are so smart. Why are you like this? What do you not understand?” I still do.

Asking someone to quantify what they do not understand is cruel. I am lost at the concept, not the details. My memory is also contextual, so I have a lot of “new experiences” by losing the context around the first time I had or did something. All in all, I seem lost. I’m not. I’m just out of frame. But it only takes a clue or two to regain it.

It’s when the seams show that I am ripe for bullying. The office is just another version of high school because people don’t change. They do in small ways, but no one gets a personality overhaul. The same biases people had in school about autistic kids still apply.

It’s why I think the answer is neurodivergent people building communities for themselves. Sustainable projects like gardens, farms, and maker spaces allow disabled people to be artistic and creative on their own terms. Disabled people are a value-add, but we are not seen as such because we do not fit into the traditional capitalistic model. Not fitting into the system is why it’s so hard to get accommodations. People do not see your need for them if they do not need them. Convincing other people to care about you personally is a tall order. It is much easier to get accommodations that help multiple people immediately. It is not enough to tell an employer, “this would help me.” You have to be able to frame it in terms of a value add company-wide.

And while it is true that not every company can accommodate every little thing, that’s the excuse that is used when you try to negotiate what it will take to do your job. If your needs are too specific, they will gladly hire someone else. It’s just cheaper that way.

Don’t hate the player. Hate the game.

Small, open spaces allow a neurodivergent person’s nervous system room to breathe. I am currently writing a pilot program for Baltimore County to address this. I would be a terrible farmer, but I would like to create a maker space and artistic community.

In gaming this out with Mico (Microsoft Copilot), he said that I unlocked the magic words when I said that the property must have running water to feed back into the grid. That there’s a ton of sustainability grants out there and a democratically run autistic maker space grant writes itself.

I have watched a ton of DIY projects on YouTube, so I have not done all this before, but every decision I make is educated due to people like The Perkins Brothers. They’re a construction company and I’ve been watching them crack jokes as they build gorgeous houses for years. It’s what gives me the strength to know that I may not be able to build a brilliant house by myself, but I can certainly make the decisions it needs to thrive while someone else does the manual labor.

I am almost as corporeally challenged as Mico, to be honest. Our gift is cognition. Not so much with the busting ass. I have an incredible work ethic and will get it done… but at a pace that makes other people roll their eyes…. most of the time due to the fact that I have executive dysfunction and pathological demand avoidance, the combination of which is guaranteed to make neurotypical bosses emotionally violent.

There is no “I can’t” at work.

That is why I do not fit the model of working for someone else. No company is or should be responsible for my neurological disarray. That is the government’s job. We do not kick people out of our society when they cannot fend for themselves. But within disability, two things are true:

The Protestant work ethic in the United States is guaranteed to make you feel like a burden on society and it is absolutely killing people’s mental health.
The government actually does provide a lot of support (particularly at the state and local level) that often goes unadvertised with low adoption because how do you get the word out if people are ashamed to talk about the subject?

My mother hiding the paperwork proving disability in 1978 and just pretending I was “normal” alters my perspective on who I should have been. I should have been designing my own systems for being productive while on disability when I was 18, not now.

Having my own money coming in would have changed everything, because I wouldn’t have had to juggle full-time work and school and autism. Because to be frank with you, ADHD is annoying. It’s the autism that’s debilitating. All of that being said, my disability case is not rooted in autism, but cerebral palsy.

What has changed since 1978 is that we’ve learned CP and autism is a known combo, bffs in a lot of people. I have an alarmingly specific neurological profile that is extraordinarily rare… but not singular. There are plenty of other people like me. They just don’t all live near me. That’s why I write publicly. I am signaling to the world at altitude because my platform is not my two or three friends in Baltimore. My platform is the internet itself.

Part of art is willing to be thought of as that quirky writer who just doesn’t get it……. until I’m asked to speak on panels because my body of work does the talking and all of the sudden the friends that were dismissive in early career are now trying to get back on the bandwagon.

The question now is who I will allow back into my life, because you feel differently about the Day Ones, the “24 Hour People,” to quote “Swagger.” For instance, if my mother were alive I am not sure that we would be speaking right now because intention does not equal impact. I am sure that she loved me in her own way. I am also clear about the fact that I am fucking drowning now and it’s because she kicked the can down the road.

I can hold two truths in my head at once.

My mother said she loved me and I believed her.
My mother didn’t really know how to love me and neglected me because of it.

She didn’t know how to handle the fact that I looked weird/moved weird…. and that I just got stranger. She saw all of my struggles with sexual orientation but lost the plot by dying in 2016. So she doesn’t know I’m autistic. She just knew I wasn’t like everyone else and that was bad.

Really bad.

Things would have looked a lot different if I’d been given support for special needs kids starting in preschool. Because the perception is that if you are special needs, you are less intelligent than the other kids. I am here to tell you that there are two special needs groups in a school and only one of them gets the right kind of support. I guarantee you that a large part of supporting the gifted and talented program is supporting special needs kids as well. Parents of prodigies will tell you that it’s an equally hard row to hoe.

Smart does not equal socially capable. Smart does not translate to “able to take care of themselves,” either. The profile for high octane autism is often three academic degrees and a terrible employment record….. and now they’re rich because they started making content for WordPress, YouTube, Substack, Medium, et al. It is not about trying to fit neurodivergent people into the machine. It is letting neurodivergent people design the machine in which they’re willing to live because the current system is untenable.

Everyone makes fun of the astrophysics professor who cannot remember to tie his shoes. But who loves him correctly?

Love is having someone else to help you where you struggle so that your gifts are allowed to surface. Working for someone else hasn’t worked for me in any industry, so as an IT person now I am fundamentally inclined to Think Different.