Crash

Crash

 

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!

Wardrobe

Wardrobe

Clothes are a determining aspect of the Human phenomenon. I do wear them, too!
Let me ramble about this:

All the while I am not known for being sharp-dressed, I remember a time when I felt excitement around fashion. That must have been around puberty, where curiosity towards the expanding world, the feeling of the own potential and wild hormones take over much of life’s trends.

Still, I had my good old clothes that I knew the feel of.
As a child, so go the stories, I wasn’t gonna have any new beanie or didn’t get the point of trying on shoes that I didn’t even like from the outside.

It took many years, before I switched from wearing my current pair of glasses or everyday shoes to rags before buying new ones, towards having a 2-shoe-system and two pairs of glasses at my disposal.
I can even tell of the newly found advantage of being able to make a non-essential choice about those outer aspects, which supplies a small amount of feeling empowered every day.

Were I not aware of the existence of fashionability or taste, I probably would go for cargo leg wear and all sorts of hoodies with pockets. Aren’t pockets so practical for transporting allll the useful tools and trinkets you might need out and about? And don’t get me started on jackets, aka ‘the man’s purse’! 😀
The more palpable functions a piece of clothing possesses, the better I feel owning it.

Modularity is a wonderful thing as well! The easier to combine anything in the closet, the less thought must go into the whole process.
Then again, some people might be not familiar with the possibility to pair some shorts with a hoodie or even skiing socks, the coolest kind of sock, so versatile!
Colours are somewhat more of a novelty, a personal touch of choice, as my favourite Red doesn’t pair with many colours. Another detail is anything written or depicted on my clothes. There is a brand clearly stating my own name, a no-brainer when it comes to choosing new clothes, but I really like to make up my own designs to get printed on clothes, so that they may always have meaning on top of function.

Choosing what to wear is hard enough, but with an unruly waist, sometimes clothes get tighter than we want.
But next to the fact that I notoriously often choose poorly in regard to weather and temperature (hoodies are just too comfy), I also don’t recognize the faint possibility to exchange tighter shirts for wider ones, because my wardrobe seems to be pre-calculated for the most part and not subject to spontaneity.
This leads to dismay more often than I care to admit.

And why don’t I ditch that 10-year-old jacket that I refuse to see as worn-out yet?
Because it has the most wonderful Velcro patch, which I use for stimming when shopping, for example.

Sensory-wise, clothes are ever-present; so they’d better make us feel nice, shouldn’t they?

My Autism is real

My Autism is real

This article scratches the surface of that pressing question, “Should I be diagnosed or better not?”.

And that is the first point I’d like to make: A determining factor is how pressing the matter becomes. (unbecoming wordplay: how de-pressing it becomes)
As for me, at a point a few years ago it became so unbearable, I sought diagnosis. But for others, who objectively could easily fit into the criteria, it is most apparently not pressing, if even a question in life at all.

The second big thing about it is about chances and struggles. Two opposing factors, determining a life’s success, though depending on our decisions towards them.
An official diagnosis opens up bureaucratic access to specific sources of help and support, differing mostly in regional availability.
Not every person, doctor or employer around me understands or endorses the changing process, but it all remains a matter of understanding neurodiversity, and we seem not to be quite there yet in society…
To say it in an abstract way: The way I live up to my good will might have changed, but not the good will itself. In a perfect world, there would be no question about that at all.

Being diagnosed does alter only one factor, to have the most official external affirmation of this complex and deeply-rooted neurological phenomenon.
It is one fine thing, to feel truly connected to a group of people you share so much more with than with the majority of those around you, but the rationally strong side of autism doesn’t allow for certainty without the best-known source.
In the past, I only pondered autism when I had bad days, but in my better days I just polished the armour again and tried to fit into whatever shape had a good rulebook to follow.
This might be the strongest point for me. That I lived through years and years of denying myself closure about a pressing struggle, navigating the daily minefield towards my chances, which could never account for the level of difficulty I was living on.

For when you go and get a diagnosis, it becomes a serious responsibility to act true to your nature and to your needs.
Following this responsibility might stir up your surroundings, abolish old habits, destroy perfected routines and holds up a plane mirror in which my own projection of myself didn’t fit the shape I began to see.

All this change hurts and seems to lead me away from what I thought my life should be.
But shouldn’t my life be about evolving, about healthy choices, about taking myself seriously, about being happy, in order to make the people around me happy?

Even though I am going through changes now, my diagnosis helped me to go in the right direction and to never doubt the reality of it. And the reward is a life more true and more direct and more unmasked, just how I like it.

Coming Of Age

Coming Of Age

A secret I couldn’t solve for a long time. How I could be doing grown-up stuff maybe, but how to truly be grown up, a great mystery!
Being a grownup, that’s the job of those who have already grown up. But at a point, a point of dreaded change, I have more in common with them than I used to look up to.

Still, there are goofy grownups, stern grownups, respectable grownups and idiots and role models and walking warning signs and complex individuals paving the ways of society.
As a person of his mask, I am always looking for an ideal, some golden thread to follow. I have mastered many areas of life with this strategy, for better or worse.
But I couldn’t figure out how to be a real grownup, which all humans seem to become eventually.

But then I found it.
The thing that makes a grownup grown up, despite varying age, silliness, vocational position or family configuration.

It is the amount of responsibility one takes on.

It makes sense, that a 16-year-old moving out is more grown up than a 25-year-old stretching their legs under the loving parent’s table and even the same person can be a grownup at work and a child-per-definition at home, in the absence of responsibilities. That said, becoming a parent should result in one of the greatest responsibilities of a human.
Some responsibilities are handed over, some are bestowed upon, some are lying around, some are more and some are less highly regarded.

The universal traits of the average grownup, be it a lack of goofiness, being weirdly organised or thinking twice, are only a reaction to the assumed responsibility, of whichever kind and whichever place.

Responsibilities don’t exclusively affect the outside world, though. There is an oftentimes neglected part of a human’s life, which is better off being graced by immediate responsibility and even care. And that is our inner world, the lifelong journey of discovery into our depths and the response to what we might find.

In the past years, I had much inner evolving to do, in terms of assuming responsibility for what I found out about my inner workings.

A child gets its world built and in turn builds its world.
And thinking of it as world-building, at some point I had to learn to live in the grownup world I’ve been cooking up inside my brain. With the funny twist of not adding that very brain into the grand equation.

Wouldn’t it have been “the responsible thing to do” to plan out that world with the highly specialised perks and inevitable limitations of the autistic brain?
If only I knew… Or did I, in fact? Because I built many parts of my inner and outer surroundings to be autism-fit already.
But do these function with standard requirements of a perceived grownup? Or do they rather fit the characteristics of the life of a child?
To make sense of this mystery time and time again, I like to remind myself that being a grownup has no other determinator than the amount of responsibility resting comfortably on my shoulders.

And my, have I grown evolved lately!

We don’t have to be grown up to reach our potential, we need to take on responsibility of our own potential in order to be grown up.

Hard

Hard

Getting out of bed is hard, making breakfast is hard, remembering appointments is hard, going outside is hard, deciding on a healthy thing for the day is hard, staying vigilant is hard, getting up from the nap is hard, meeting friends is hard, making appointments is hard, writing is hard, taking photos and developing them is hard, watching a movie is hard, taking a shower is hard, playing a story game is hard, remembering to drink water is hard, shopping is hard, breathing is hard.

Highly subjective, indeed! What’s hard –and what isn’t– varies greatly from human experience to human experience.

Often times it seems a great compliment, if you make something look easy. Finishing a video game is seen more honourable, the higher the chosen difficulty was, and driving a manual separates the drivers of the street.

The more we are able, the less things are hard. It will shift with age and experience(s), but for every person, regardless of age, there will always be things that are harder and things that are easier.

Only we are not always too honest about the level of difficulty, be it in order to appear strong in front of others or in front of our very selves.
A rather advanced method, which I haven’t mastered in the slightest yet, is not thinking about the thing at hand at all. This makes the words easy and hard irrelevant, up until the bare physical level.
As getting started with anything is universally harder, we would win over others by downplaying the difficulty: “It’s easy!” and kids might hear this more often than adults.
But we then learn, pretty soon, that the hard way yields more rewards, especially in terms of recognition of others, and they sure will tell us.

On productive ventures, we make every effort to get things to be easier, not harder.
So, looking at our lives as a productive venture, we appear successful by having an easy time wherever we are and whatever we do.
As when we portray hard times, people are having a hard time in turn to relate, to solve or just to be exposed to that hardship. Mind you, this can be rewarding for them in its own way and would likely make it easier for us.
As explored earlier, we might stretch the perception of reality to convince ourselves (and others) of easiness or hardship (I like to stay away from the latter). But if the motives are noble, we are not causing harm by telling tales of ease to those around us.
Up to a point, again.

This is what I always aimed for in life: To have all around me have an easy time. With more or less success, I worked myself into a state of apparent ease, and that’s how people know me.
Until I couldn’t stretch my own perception any further.
Until I noticed the pain of showing ease only to the outside.
Until I wouldn’t have any energy to carry my shiny suit of armour.
Because more things are hard for me than I have been admitting.

One of the hardest things in this process of change is admitting it. Admitting that you indeed have a hard time, even worse: That you had a hard time for a long time. And that you still want to make things easy for everyone involved in your life, just not the way it used to go.

There was a time, when I managed as a well-put-together person, but now even logically trivial things seem to be a challenge daily. Or were they always? Where did I take the ability to do them?

Living an adult life and also being out of energy takes away all cushioning and lets me feel the bumps fully now.
Why are all those things hard? Because I lost the context for them, for the things that drove me internally, the things that are just there, and you don’t even recognize them, until they are missing.
Call it the autism or ‘how I operate’, I have always been thinking in a meticulous way about my reasons, my drives, my motives, my higher goals. I can’t do anything ‘just because’, it is unbearable.

So, was it the tight routines, going to work daily, living inside cosy Hotel Mama™, the leftovers from the energy reserves of past years, or all of them together, that made me hold up my life?
The question for this year is: How do I get my life back in a healthy order and live easier and more honest with myself and with you as the people around me?

Luckily, I have much support, love, compassion and hope still. Those create a promising environment for Sir Oliver to Evolve! ❤️