The boy in the video cheerfully corrects his mother: “I don’t suffer from autism, I just have it.”

Yes, I just have it too. And whatever we humans have or don’t have, we do everything to avoid suffering. Even though the level of suffering and its acceptance is often held way too loose.
But what if that suffering shows up suddenly and all unexpected? When all of a sudden everything becomes unbearable and all of the same sudden our world falls apart?
What if we fear the trauma of a breakdown so much that the very art of living consists of preventing it as much as possible?

Over the years, especially recently, I’ve learned a lot about my fears, my subconscious life design, and my neurodivergent nature. Actually, it’s a whole topic on its own, how a (for me) low-stress life differs from what might sound normative…
And yet, after a long time, I had a breakdown again. In public, at a special place.
And I decide to share it here.

Among neurodivergent people, three stages have been agreed upon: the Overload, the Meltdown, and the ultimate Shutdown.

Overload

This is the autistic experience, when you pay attention in support groups, read between the lines, or even trust memes. In terms of the three stages, Overload means an exceptionally critical level of overexcitement, overburdening, overextension, overexertion, overstraining, and overtension, which in the best case makes itself painfully noticeable.
In the worst case, though, it only shows too late, because we humans seem to love to push through and hold out.

My specific Overload consisted of several elements: changes in life (a new phone with shipping difficulties, the end of my work contract at my longtime company, planning a new wallet concept, thoughts about new occupational horizons, rethinking routines), second hand worries, a city trip by train, a bit of Weltschmerz, a bit of heartache, sun, people, a medieval market, old impressions, new impressions, human needs.
Every single thing has its own good and I always have solid arguments for my conscience. And the less you actively think about each single point, the easier life becomes — but that exact thing is incredibly difficult. And when you don’t have a good bucket to bail water out of the boat, the water rises faster than you want and the air becomes tight…

Meltdown

Here the pressure is too great for the brain’s walls, and something has to happen! What that looks like, whether very obvious or completely suppressed, depends entirely on the individual affected. But it always brings consequences, whether visible or not.
I am super good at suppressing. I had some bad experiences with outbursts, and as a child, I was raised within strict limits. This probably saved me a lot of confrontation and made me seem patient and understanding, but somewhere the pent-up feelings have to burst to.

It happened at the peak of the day, the big show tournament, when my bucket could no longer handle the flood of impressions. People too close beside me, jubilation and clapping, frothing horses, intense spectacle, no free seat in sight, always on alert for careless touches, not missing out on the big event for which we were here.
My want to scream loudly, to put people in their place, to throw hands and run away — I masterfully suppressed all that, as I am a decent person after all and that’s how I grew up.
And despite the rigorous use of stimming tools (a fidget gadget and an acupressure ring), the other side inside of me burst open.

Shutdown

The immediate consequence.
I often compare a shutdown to a plant closing its blossoms and wilting away.
There’s nothing left, I tense up, I close my eyes no matter the surroundings in order to at least dull some of the sensory onslaught. I had already put on my hearing protection before the show started, because without it, my nerves would have been raw much earlier.

Toward the end of the grand spectacle, some seats next to me became free so I no longer had to focus all my muscles into holding my limbs together and could find some room to breathe. That’s when it became clear what state my whole organism was in. I was breathing like a marathon runner after the race.

While all these things are happening, a certain part of my brain keeps on running. The part that wants to adapt and merge with the environment. I had no strength left to clap along from the beginning, just hoping that didn’t bother anyone. But much worse was the obvious thought that hardly anyone around me could understand what was going on inside me. I can explain it, sure, as I am doing now, writing this text for hours — but in that moment, in the turmoil I was in…impossible!

And that feeling, being there among thousands of people, forsaken and alone, suffering from things people paid a lot of money to see, which seem to please many and had pleased me in past years, that dealt me the penultimate blow.

The last blow was a physical one. When people were leaving the stands, no one sitting beside me anymore, me struggling to process all the effort while gasping and panting, I got a jab in the neck, possibly by accident.
People who know me well know how easily I scare at times. That often depends on the current tension which I rarely can identify and even more rarely can communicate.
So my physical reaction was stronger than I would have thought possible. I jerked apart and back together in a strong jolt, and my head and arms spasmodically compensated for the unexpected shock.
Embarrassing. Out of control. Inappropriate.
I quickly fled to a now-empty bench where I had room all around, continued my breathing, and kneaded my stimming tools. All composure gone. Eyes closed. Tears. Storms of thoughts. Loneliness in the crowd.

But I was not all alone. My dear friend, with whom I came, rescued me. I had no words left, so we agreed via WhatsApp that it was okay to leave, and with lowered gaze and no pretense of behaving like a healthy person, we went back to the hotel. With fewer and fewer people around, but most of all with the understanding of the one person I was with, I managed to calm down, and after a night’s sleep and without further sudden stress factors, I made it through the weekend’s remainder okay.

What would I need in that moment?

Even more important is what I could have needed before, especially before it was too late and even before it was way too late.
Namely, basic preparation on how I could behave in such a situation, what emergency breaks there are, what is okay and acceptable, and the certainty that my brain’s twists and turns are understood.
This might sound utopian, but it would have helped even in the unexpectedly raging storm.

What helps in the hot moment, and the following points already contribute to the factor “understanding the brain’s twists”, is avoiding new sensory input, creating space, non-binding offers of concrete help (I can hear you but might not be able to react appropriately), and easing communication worries.

Apart from the example above, where some things went well, given the circumstances, here are suggestions for what might be helpful in the case of a person already in sensory distress:

• Be careful not to cause sudden noises, touches, or the like
• Depending on the person’s environment, give them space and possibly ask others for consideration
• If decisions to change location are necessary (moving away from the crowd, changing seats), make sure response options are as nonverbal as possible: “If you want to go to [specific safe place] now, just stand up and I will lead the way.” This allows choice of action without additional communication
• If further communication hurdles lie in the way to safety, like buying a bus ticket or other situations with direct human contact, it helps if an advocate intervenes

And it really is quite an adventurous-professional feel when we leave the house equipped to the teeth with hearing protection, stimming tools, alternative communication methods, emergency plans, and a quiver full of action strategies.

That’s how we’re strong!