Autism II

In November 2022, I wrote up some thoughts about learning to understand being a person with autism as an adult. Since then, I’ve jotted down notes and paragraphs from time to time reflecting on it more. Being that 21 June is my birthday, I thought I would share some of these here. I mainly hope that people with autism who find writing down their thoughts difficult may find some connection here. I always appreciate when an author manages to verbalize an idea that has felt incoherent in my own mind for so long.

I am 42. I am three years from the age of my maternal grandfather, who died of a heart attack at age 45. My mother was 12 when he passed. It’s a story I’ve known since I was a child, and it wasn’t until a few years ago that it really started to swim around in my mind. I jokingly celebrated when I turned 34 that I’d outlived Jesus, but this one is a little closer to home. I also add that the average lifespan of autistic males is 39 years old. COVID-19 has also made me think more about my mortality. When I reach age 46, I suppose it will be like having navigated a boat through treacherous waters, not entirely safe now but done with a period of intense potential for harm. Though so many seem to be dealing with grasping mortality poorly, I think I’ve come to a healthy place with it. I have no guarantee of when my life will end.

We are born with the currency of time and can never check its balance. We only know how much our account holds when there is none left. In the meantime, I want to enjoy what I enjoy: My wife, great art, dogs. That’s about it. I am a simple man if nothing else. I’ve thought a lot about what I want, which is contentment. When we were preparing to leave the States for the Netherlands, one of my sisters asked me where I was excited to visit when we were living in Europe. I couldn’t really answer her, and I wondered why at the time. I understand now that it is because I don’t feel dissatisfied with where I am. I understand the appeal of traveling, but I have never yearned to go on many trips. I find happiness in my home and familiar surroundings. I want to live “simply.” I say this knowing that my reliance on my laptop and iPad work in contrast with that. Though, I don’t feel the need to have the newest thing. I’m happy to have something old or refurbished. I hunger the most for time with my wife and enjoying art. I can’t name anything I would want as a present for my birthday or Christmas anymore. I am perfectly & happily content with what I have.

I spend a lot of time thinking. The moment I wake up, I feel like the hard drive of my mind starts spinning, and I begin analyzing everything. This probably sounds hellish to some, but I don’t mind it too much. Yes, there can be moments where it would be nice for my brain to shut the hell up, but I would never want to live as someone who doesn’t think deeply about things. I enjoy contemplation and reading things that help me develop my ideas and worldview. THC does a beautiful job in the evening of calming my mind…well, most of the time. Every once in a while, you get a strain that gives you an intense head high and gets real existential here. A month ago, this happened, and I think I had a mini panic attack. It’s infrequent (twice in the last six years). For the most part, the drug calms me down, allowing my mind to loosen its muscles and relax.

I have realized many things about myself and my autism over the last year. It has become one of my fixations, and that’s not uncommon for adults with autism. One big thing I have realized for myself is knowing what I know now about my mind and life, I can never return to how I was before. I can’t mask how I was because I have felt what it’s like not to do that. It feels so good it can make you cry sometimes. To be me in my mind and express myself in a way that doesn’t feel like I’m second-guessing every gesture or word. That still does happen because it became a reflexive part of my being. It happens the least when I am around Ariana, and I am getting better around some friends in the Netherlands.

I am sure I’ve been experiencing Pathological Demand Avoidance (the not-fun kind of PDA). PDA is an almost involuntary resistance to doing anything my brain perceives as a demand. It manifests in silly ways: someone tells me to stop doing something without reason, and I want to know why they want me to stop. A simple “It really messes with my concentration” will suffice. I know I should respect a person’s wishes, but my brain wants to know why. Growing up, I was told to stop doing things simply because my parents desired that I was invisible.

On the other side of PDA, I fear navigating complex bureaucracies. There was a time in 2008 or so when I had to survive. My dad had kicked me out of the house. Thanks to the kindness of a work colleague and then a former college classmate, I was able to find some stability for myself. Growing up, I had such anxiety fed into me about money by my father that now I cannot look at our bank account balance. That is Ariana’s territory, and it is because almost any amount of money won’t feel like enough. Fears about unexpected expenses will emerge, and I’ll become quietly panicky that we will have nothing and be destitute. It also does not help that my parents made it clear there would be no substantial support for me as an adult if I made a mistake and ended up in a bad spot. Any help would be a punishment, and I would have to push myself down to please them. Ariana has love beyond definition, in my opinion, and takes care of the finances, even though I know it sometimes stresses her. She understands that my anxiety is in a whole other galaxy, so she does it because she is so loving. I do what I can in my way to show her appreciation. They are such small things that I know can’t measure up to what she does for me.

One thing I’ve come to define more clearly is my annoyance with the indirect communication of neurotypical people. They speak in such generalities, with such vagueness, and my brain cries out for specificity. I know they don’t mean harm, but it can make communication with an NT so frustrating. They don’t typically interact with someone like me, and years of being conditioned to be “flexible” cause a sense of guilt to bubble up over wanting to ask them to be more explicit. I also find the idea of a manager in a workplace saying that they don’t like employees that ask lots of questions after being given a task to be a sign of a bad manager. Do you want the job done correctly or quickly? Often the two are at odds.

This can make me feel alien sometimes, stranded on a planet where people speak strangely, knowing no ship is coming to rescue me. I have been stuck here for my whole life. The worst is the ever-present feeling that I am in trouble somehow. Any minor brush with an unfamiliar person that involves a harmless mistake suddenly causes my cheeks to flush, and a need to apologize overwhelms me. The natural evolution of that is to come up with reasons to turn people into villains before I can disappoint them or perceive them as disappointing me. I know why my brain works that way, as a means to protect myself, but it’s also a damaging habit if you ever want to develop a friendship with anyone. People with autism commonly have intense feelings about social justice and are very “black & white” thinkers, which I suppose feeds into that. Navigating how to hold tightly to your principles while accepting people for who they are is tricky. But I know that it is worth it to struggle.

One thing that annoys me about my brain is when people I haven’t seen in a decade or more pop up. That happens daily, multiple times, in fact. It causes me to wonder if anyone from my past, particularly those college years, ever has me pop up in their head. I do find something horribly selfish about reaching out to any of them. I would do it just for myself, and I don’t think it would be about knowing them. If that makes sense? So I discourage myself from doing it because it has that selfishness embedded. Connections with people outside of Ariana and my siblings/nieces/nephew feel impermanent; either I will not let people get to know me too well, or they have no interest once they begin to understand who I am, especially as aspects of autism surface.

During our first session, the last time I tried therapy, the therapist commented that I was “extremely self-aware.” She was right, but the problem came when Ariana told me about her suspicions about my autism, and I realized she was correct. Yet, the therapist was very dismissive about it all, behaving as if being autistic didn’t matter when it came to therapy. A year later, I’ve seen in countless places that hyper-self-awareness is very much an autistic thing. If I only experience one of these symptoms, I don’t know if I would believe it, but because so much of my behavior over my entire life aligns with so many things associated with autism, it feels like the natural conclusion. And it also does matter if I was seeking therapy. Therapy is about the emotions and the mind, and mine are profoundly shaped by the wiring in my brain.

So weirdly, through reading, I have been going through therapy to an extent? I know the cliche of men will do anything but seek out therapy, and there’s some validity. In my case, I would love a therapist who gets me, but it also costs a lot of money, and we’re having to be very tight with what we have these days. It would be much easier in a world with free-on-the-point-of-delivery universal health care. I don’t have the macho hang-ups of other men; I don’t care about that shit. And there’s a stigma that a lot of people carry about the neurodivergent, which colors the way they treat you. Sometimes it’s an unconscious bias, and I’ve seen people suddenly change with me as they pick up on my disability.

I’m struck by the openness learning about my autism has cultivated in me. A few months ago, I got a nasty comment on one of my reviews for Surviving Christmas. Talk about a bizarre hill to die on. As part of their comment, they went transphobic and pretended to ask if I was transitioning, and then a bunch of bullshit along that line. Before deleting it, I looked at it and thought, “What exactly does being trans or not have to do with this person having shit taste in movies?” I believe transgender people are far braver than me. That they live so openly as who they are while weathering reactionary hatred and potential harm or murder is a testament to their bravery. Do you want to compare me to a transgender person? I’m frankly honored. I hope I live up to that standard, actually. I see no enemy among marginalized people, just fellow humans trying to survive in increasingly violent societies. Also, if you want to insult me, you must pledge at a $20 or month higher level on my Patreon. If I have to live under capitalism, I will use it in my favor when possible.

These were just some thoughts I’d had over the last few months, jotted down in a Google Doc with the idea that I’d share them at some point. I hope that you found something of value in them. Though, I have come to a point where I write more for myself than an audience. If people like what I share on the blog, that’s good, but if I got zero views a day, I would like to think I would still be writing reviews and posting them anyway. (I will say in the last year, I’ve been contacted by an RPG company to do a review of one of their solo games, which is coming up next month & a children’s book publisher gave me digital access to their upcoming catalog because they liked a review of one of one of their books on my other blog, The Reading Circle. I like free stuff.) I like how my mind plays with an idea, with a piece of art, unwrapping it, examining it, and searching for a connection. I have no idea where my life will lead in the remaining time, so I try to enjoy the days as they come, not let anxiety and fear win, and try to see the beauty within the horror of it all.