surviving fire season: autism, and the blessing / curse of isolation.

TW/CW: This story contains descriptions of sensory overload that might trigger autistic people, and mentions of suicide.

“It fucking burns” — that’s what I want to tell people who ask what it’s like to be autistic in today’s world.

The disorder itself isn’t bad — it’s neutral. It’s the circumstances that autism needs to be manageable that create the volatile conditions when they’re not met.

Autism is having a sensitive brain. It’s a nuclear reactor surrounded by workers who don’t understand it, and who can (and often do) push it to the point of disaster.

The fabric that kept you warm earlier is now brushing on you with every single pass, and it feels like it’s sanding your skin down. Someone drives down the street with a car noise mod, and it makes a loud popping sound. It feels like you’ve just had a firework explode in your ear. Your own breathing feels like an earthquake that doesn’t cease.

The pain is so bad that at times I can’t speak or move. Sometimes, I’ll catch myself in the mirror and can’t process the reflection of me I see. How am I unscathed, not covered with burns?

The skin that covers me feels like scorched earth. To everyone else, it looks like skin.

That’s what is so dire about having autism in a world without an accurate understanding of it. It’s giving a fire hose to someone who doesn’t know how to spot the fire.

You manage the fires instead.

You base your whole life around stopping meltdowns, often cutting yourself out of the most common experiences in society because they ignite you. Others never see what you can be: they only see you defined by what you are when you break down, unable to contain it.

I go to get groceries without headphones. My brain screams from burns in the fever pitch of the heat, and I become convinced that I am going to disintegrate where I stand. Everyone around me just sees someone pacing with tears falling down their face in Target.

Autism isn’t painful. Having a meltdown because I can’t access the conditions I need to self-regulate is.

When you remove yourself from common societal experiences and milestones, you become disconnected from society itself. You become excluded from opportunities you want because you can’t get through the same checkpoints everyone else does, even if you are at the same destination.

It’s a self-perpetuating cycle. We exude pain because the society we live in sets us up for failure, so others set us up for failure because they don’t think we can live in society due to our pain.

The gap in communication about what autism truly is and how it affects people leaves me to have to come up with such gruesome descriptions to even capture it for people who aren’t autistic to understand. I’m not being weird — I’m burning.

I don’t know any autistic person that didn’t have an enormous amount of pain in their lives from how others treated them, or that doesn’t have a poorer quality of life because of inequitable access to societal opportunities.

People see us as inhuman, because we can’t be understood enough to give us equitable access to things that would make us more integrated into society, and the things that improve quality of life. And when society doesn’t want you to participate, the easiness of life everyone else seems to get, evades you. It puts you into forced exile.

Society won’t change for you. You cannot live in society. One of you must leave, or break in the process of trying to stay.

For others, when they look at an autistic person, they see someone who appears socially dead because they’re in isolation. The societal exile doesn’t appear to be much different than what they already do to themselves.

When isolation is forced, it’s dehumanizing. When isolation is chosen and understood, it’s a freedom that gives you the chance to recuperate and integrate with society as you want to be with it. It’s the difference between an exile by public jury and a planned vacation.

Chosen isolation is what allows me to live in society. When I drive into places without service, leave social media, run errands at weird times of day, don’t look at messages, stay in the woods or other desolate places — the flames aren’t there.

For some, isolation isn’t death — it’s a survival tactic when you live in a world where most experiences burn you alive.

I spent a very long time in pain because I wanted so much to be loved, and I thought that love came from societal acceptance. A fire doesn’t cause fear when it looks controlled.

People still noticed. I still burned.

Every October, November, and December for as many years as I can remember, I re-experience a period of trauma and pain so intense from burning in silence.

This is fire season: the anniversary of my last suicide attempt, my birthday (and other suicide attempt anniversary), the day I become estranged from ½ of my family, my autism / ADHD diagnosis, and more. For 2–3 months every year, I have 3–4 meltdowns a day for months, without fail with migraines in between. Everything that can be burned will be.

Anything that steps over the line will immediately ignite me, and I send it away, screaming in pain.

I can’t do anything but ignore messages, end friendships, retreat into myself, separate myself from those I love, avoid eye contact, cancel appointments, and do what I can to evacuate others. I want others to cross the perimeter, but I can’t save them from what I experience. So, I force them out before they see the fire coming.

During fire season, all I do is burn, and all the people I love can do is watch from a fire tower.

To slow the burn — isolate, evacuate, and hold on. It’s a form of self-preservation, and self-immolation. You’re cutting off others to avoid them burning you, and igniting a greater meltdown that you can’t protect them (or yourself) from.

Eventually, I want to come back to the clearings burned, forests razed, and towns abandoned. I want to have people in my life without worrying about needing to rush them out, losing them in the process.

That’s a dream. The reality on the ground is much different. These burns are unseen — but they’re not in vain.

In the midst of the burning, I find what keeps the pilot light on in the first place.

• I read the crew survival investigation of the Columbia shuttle disaster to make myself a better leader.
• I watch the footage of Mission Control as the Challenger incident happens because my hyperempathy will cause so much pain that I will do anything to stop it from others.
• I go through datasets like a neural net when frazzled because the patterns make me feel better. I take in massive amounts of controlled data about extremely painful subjects to make solutions for it.
• I want to build software, robots, drones, computers, and work in isolation on projects I care about. If my career in tech fails, I want to become an aviation accident investigator to determine the cause of crashes in commercial aviation.

I want to use the pain that causes me to meltdown to stop it from happening to others. I burn, so others don’t.

My skills, pattern matching, hyper empathy, ability to form deep relationships without end, the need to be working on stuff that has a greater purpose, the drive to understand tragedy to stop it from happening — those are the things that replant the trees and bring life to the area.

Isolation is both a curse and a blessing. It’s the cause of fire season, and the only way to put it out.

It’s fire season now, and I’m working to keep it contained. I’ll be doing this for years to come, until common perception around autism and accommodations is more understood, or until I build a place where my needs are met myself.

The only thing I wish I could say louder as I gather up those I love to go, is ‘I’ll come home when the burns heal’. My silence isn’t the end of my love or connection to people in my life, it’s the only way I can save it.