This is my flashlight

I’ve avoided reading much about autism, partially because the little I have read made me angry and partially because of the dumpster fire of self-diagnosis and DSM-5-inspired interpretive dance that has flooded the internet the last few years. Someone recommended Neurotribes to me at one point and it was interesting, but rage-inducing. It’s basically the greatest hits of neurospicy children being tortured by well-intentioned parents, snake oil salesmen, and Nazi mad scientists.

Instead, I spent a lot of time just thinking about my particular flavor of spiciness, how it affects me and others, and trying to sit with all of that on my own. That’s been productive, but I’ve reached a point of “now what?” How do other people deal with some of the challenges that led to burnout (and threaten it in the future)? How do I even talk about myself to others?

You tell someone you’re autistic and they roll through all the data points they have for that. Non-verbal, violent kids. Temple Grandin. Rain Man. Love on the Spectrum. Random assholes who were mean to them and blamed their Asperger’s. And I don’t present as any of those things (maybe the last one, a little), so my assumption is, in many cases, they think I’m full of shit.

But I also don’t want to lead with “here’s a thing I struggle with” - the “functional” explanation that some people go with. I’m not disabled. I just sometimes experience things that are disabling - like someone’s mic cutting in and out on Zoom and that feeling like I’m being boiled alive so I have to drop off the call. Or not knowing what “happy” feels like. Given the choices, I mostly keep quiet about it.

But I’ve been reading more. Trying to figure out different tactics to smooth out some things that are rough, and how to explain myself when I feel like I need to.

It’s great that people are talking more in the open about mental health stuff now, but that’s also brought on a wave of both well-intentioned misinformation from armchair psychiatrists and influencers trying to turn #depression into likes. There’s also the Autism Speaks-type folks who view neurodiversity as a cancer that needs curing and can fuck off into the sun.

Kieran Rose (The Autistic Advocate) has turned out to be a pretty good resource, although like most of the good things I’ve found, their website is very hard to read. It is one of the less visually offensive ones though. I legit don’t understand how people are still so bad at web design in the year 2026. /tangent

They have a post, “What is autism?”, that I found both helpful and frustrating. Helpful in the sense that it gave me a better framework for thinking about autistic experience. Frustrating, because they deconstruct the language describing autism and don’t initially replace it with anything. “There is no such thing as autism, only Autistic experience.”

I can appreciate arriving somewhere like “the labels are imperfect, but we can still use them for short hand,” on a purely intellectual level, but it doesn’t scratch the itch of “I just want an easy way to talk about this stuff without handing someone a book.”

The deconstruction is purposeful though and he does ultimately point to monotropism (albeit, in kind of an aside), which turned out to be a really helpful model for both thinking AND talking about autism. I explained it to my wife using a modified version of the metaphor the initial researchers used:

Most people experience the world like a well-lit room. The light is evenly distributed and your attention is yours to direct or re-direct mostly at will. Your attention is balanced.

Autistic people experience the world like it’s a dark room with a high powered flashlight that they only loosely control. That light puts individual things in very sharp, narrow focus. When your attention locks in, you can sit at a table and do a puzzle for 12 hours without remembering to eat. Break that focus suddenly, and it makes your brain very unhappy, like being splashed with freezing water or slapped in the face.

When there is a lot going on in the room, the flash light bounces around, trying to engage a deep focus on anything it can latch onto, but not being able to hold on to anything for very long. Your brain does not like this either. It takes a lot of energy and is very stressful. In some cases, it tricks your lizard brain into thinking a lion is about to eat you.

This framework mirrors my own experience very closely, and my wife’s response was basically “Holy shit, that makes so much sense for how you react to certain things.” It’s also one of the only (if not the only) model to describe autistic experience derived by people who have actually lived it.

I’m just starting this journey of really digging in and trying to sort through the chaff. Hopefully, I’ll find some more stuff like this. It’s both practically useful for communication and chips away at those feelings of being alone and weird and not knowing how to be people.