What my brain feels like when you’re autistic, and why I haven’t been writing much lately.
I haven’t been writing much lately, as you’ve probably already noticed. Like I said before, my battery is nearing empty.
Last night I was thinking about it, and I came up with a metaphor that describes what’s going on inside my brain, how it affects me, and why it can be so hard to get out of this situation once it happens.
The setting of this metaphor is the Grand Canyon.
The Grand Canyon
Picture the Grand Canyon. In some places it’s incredibly wide, with side canyons branching off and countless paths where you can hike around. And here and there, there are probably a few dozen bridges that allow you to cross the canyon at specific points.
Most people don’t see the following features. We autistics, however, do. There are ropes stretched across the canyon everywhere, allowing you to get from A to B in no time. But the price you pay is that you have to walk a thin wire.
So what is the difference between how “normal” people get from A to B, and how I see the same route?
“Normal”
Easy. You take the regular walking trails along the canyon. You carry a well-stocked backpack with a tent, spare shoes, maps, food, a torch, and everything you need for a long hike.
According to the maps, walking from A to B will take about 20 kilometers.
No big deal, right?
Me
I don’t have a map. What I do see, however, is a rope stretched across the canyon, and it’s only 300 meters long. I don’t have any safety gear in my backpack. Hell, I don’t even have the backpack. It’s just me in my clothes.
If everything is going well, I can cross that rope in no time, far faster than the 20-kilometer hike normal people would take.
This is me in hyperfocus mode. I can conquer the world and work much faster than most people expect. These wires are no problem when everything is going well, the visibility is good, and I’m well rested.
But things fall apart quickly when I’m not well rested, and this will probably sound familiar to many people on the spectrum.
Autistic meltdowns
When I’m on the rope and look down to the bottom of the canyon on my right, I see an active volcano with lava pouring out of the top. If I fall from the rope on that side, I drop straight into the volcano.
That’s what it feels like when I have an autistic meltdown. Luckily, I don’t end up in this mode very often, but others are not that fortunate.
And falling into a volcano… bad idea!
Autistic shutdowns
This is my default mode of operation. When I look down to my left, the canyon floor looks very different. It’s a frozen landscape, –60°C, with water frozen solid.
When I have an autistic shutdown, my brain literally freezes over.
Walking around in normal clothes in a frozen hellscape… again, bad idea!
Falling from the rope is a bad idea, especially without any safety gear.
The last couple of weeks I haven’t fallen from the rope, not even once. However, I did run into another issue that sometimes happens to me as an autistic guy.
The fog!
The fog is thick, and once it rolls in you can’t see even 10 cm in front of you. It can appear at any time, and there’s no way of knowing when it will disappear.
And there I am, standing in the middle of the canyon on the rope, when the fog rolls in.
Then what?
This happened to me weeks ago. The fog rolled in while I was on the rope, right at the midway point. When a colleague then asks something about a project, I know where it is and where to look, but the fog prevents me from seeing it.
Walking forward?
Dangerous.
I can’t see anything.
Walking backwards?
The same problem.
And I can literally feel this fog preventing me from doing many of the things I normally take for granted.
A “normal” person can still see the path they’re walking on. The trail is marked with all sorts of waypoints and markers, so navigating in the fog is still doable.
Standing on the rope
And 2.5 months later, I’m still standing in the same spot on that rope, with no idea when the fog will clear.
Basically, I’m just stuck there.
At this point there are really two problems when you’re standing on a rope in the middle of a canyon.
The first problem is not falling.
The second problem is figuring out how to make the fog go away.
Not falling
Standing in the same spot on a rope for a long time will give you some serious cramps in your legs.
And there’s another thing. Falling into the volcano or into the frozen wasteland won’t solve the problem with the fog. So having a meltdown or freezing into a shutdown won’t help either.
Safety gear
And then there’s that annoying fog. How do you make that fog disappear?
And the cause of the fog can be anything: issues at work, stress at home, illness, simply being too busy, none of the above, or all of the above.
Is all lost then? Luckily, no.
Over the years I’ve learned how to build my own safety gear for situations like this. It doesn’t make the fog disappear, but it does prevent me from falling from the rope into the abyss.
The “signal plan” helps!
It’s basically a list of symptoms. If this and this and this happens, I’m in state 1. If that and a few other things are added, I move up the ladder to state 2. And if I stop doing certain things altogether, I end up in DEFCON 1 and it’s game over.
Recognizing these symptoms is a really good way to prevent me from falling off the rope. My signal plan works like a rope around my waist connected to a carabiner clipped onto the main rope. If I slip, I only fall a few meters, and it gives me the chance to climb back onto the rope.
But none of this really changes anything as long as the fog doesn’t lift.
Which brings me to the second problem.
How do you make the fog lift?
The frustrating part is that you can’t force it.
Like I said before, the fog can be caused by anything and can be very persistent. It’s probably not a single cause, but a combination of factors, which makes the problem even more complicated.
Talk
In my case, what helped was talking about it with the right people. I will not go into details here but let me say that I am really happy having these people in my life.
Talking to one person in particular almost instantly changed things, even though he couldn’t actually change the situation or the fog itself.
But after that conversation, and a good coffee, the fog started to lift.
And I could see the rope again and move forward.
And to make it even more concrete: that evening I was actually able to do some programming again, because I could finally see the code clearly, without the haze in front of the text.
In short
Knowing how you react when things fall apart is one part. That can act as a carabiner when you get stuck. The other part is finding the right people to talk to, and hopefully that helps the fog lift.
On the other hand, we as autistics move along ropes; that’s our basic way of getting things done.
And yes, we’re bound to fall from the rope sometimes.
Please be gentle with us.
Sometimes.
Brain out!