a glass bridge: autism, relationships, and the quest for autonomy.

Having autism is having an experience of the world that is foreign, because the world is not made with you in mind. The way that you find solace is through carving out places where you change the world to be yours.

These places are sources of comfort, nourishment, and a refuge from the experience of existing in spaces that do not account for your pain.

I, myself, work well in chaos — only when I am able to systemize it by creating meaning out of it.

The place where I can be myself is the place where I create meaning out of the chaos of adult life:

My freezer and fridge is organized with bins. All my clothes are black because it’s the least sensory overloading color. I use plastic plates and utensils for children so I can do dishes without the pain of hearing the clang of regular plates and utensils. Metal grids by my door hold sunglasses and pins for my bag that say “I am autistic and sometimes non-verbal”.

This is my world that cares about, protects, and accommodates me. This cloak of coping disguised as quirks extends to all aspects of me. I wear spinner rings to fidget with. I only wear black colors and boots to ground me. Going outside often requires a pair of big “fuck off“ noise cancelling headphones.

In this sense, my autism is not a disorder that stays put in my reactions and experience. It spills out, infiltrating into my personality, living space, outfits and sense of style, the foods I like, right down to the bins I’ll buy to organize stuff.

Autism isn’t neatly isolated to my experience of the world. It’s an ecosystem of choices, reactions, experiences, and accommodations.

The glue of my ecosystem is systemization — creating processes, rules, labels, and areas for different spaces. When chaos is organized, it’s no longer chaos, but the manageable elements of a greater purpose.

What makes systems work, — is that they provide stability.

I can predict, modify, understand, and control the systems that determine how things happen. Systemization is the antidote to chaos, and the key to building a world I can live in, is systemizing chaos. Many things can be systemized. Relationships cannot.

People, for better or worse, are not easy to interpret by any means. There’s layers, hidden meanings, and nuances around every corner.

To this day — my system for dealing with people has been providing the most kindness I can offer. Everything society and years of therapy tell me is a good trait to have is what I put forward whenever I can.

The way interactions, conflict, affection, initiation, and intimacy unfold differs with every person. There is no system that can handle that much unpredictability.

And so, dealing with others feels like walking on a glass bridge over a canyon, but blindfolded. The paths forward I can do are the linear, predictable ones. But, once chaos is introduced, I go over the edge.

This comes across in the form of me going non-verbal, or shutting down over the course of a day until I can’t do anything but cry.

When you can’t understand others, you don’t know where the glass will break. And what appears as obvious cracks to others is foreign to you.

What’s lost in this disconnect is the ability to form stable connections that keep me from isolation.

There is no systemic filter for the chaos of relationships, and when the chaos from it all makes me fall, I stop crossing the bridge.

This makes all kinds of relationships scarce for me: not from lack of opportunity, but due to my inability to tell if I can safely cross.

Staying isolated is a tactic many use to avoid the fall. You never need to cross a bridge if you don’t want to get to the other side in the first place.

But, isolation in and of itself is another form of a death sentence. Some refuge is found within self made spaces, but the daily experience of autism with independent life is demoralizing.

I can’t go to the grocery store without noise cancelling headphones. I can’t drive with the windows down in case someone has a loud noise mod on their car that causes me to have a meltdown.

I don’t start contact first until I’ve crossed that section of a person’s bridge before.

I don’t know how to tell rude people to leave me alone.

I overstretch my boundaries at work to compensate for my inability to be social.

I don’t often go to events because I can’t comprehend an invitation, or predict if an event will accommodate what I need.

When doing social tasks is expected, the isolation that comes from not being able to do them without pain is so paralyzing, that it stops you from trying.

It’s a dehumanizing flavor of isolation — hurting yourself to perform mandatory tasks that are baseline for others, or the embarassment of staying in the dark to avoid pain in the first place.

The solution for most people who face this is to bring in others to help pave the way forward.

This works if you have those relationships as a baseline. You have parents, or a partner who understands autism — or have the ability to buy your way into removing the friction (E.G: Instacart, Doordash, etc) .

They don’t stop you from falling all the time, but they guide you forward and grab you when you’re about to fall. When you’re living on your own and you’re running out of food, but your sensory issues are too bad to drive, that’s when the baseline makes a difference.

Hardships from independence (amplified by existing in a space not built for you) are easier to deal with when it doesn’t cost your ecosystem, housing stability, and access to basic utilities.

When your baseline catches you, you don’t have to sacrifice your coping and ability to exist comfortably in the world.

Yet, there’s people where that baseline isn’t present, and they can’t cross the glass bridge to create that baseline.

You can do the tasks, be social when needed, and can be independent. But that’s all you can be. That’s where all of your balance goes. There is no extra balance to be devoted to growth, relationships, health, or free time.

That leaves you in the most desolate place I have found. Trapped in canyon underneath the bridge. That’s where you go when you don’t have the baseline you need to do tasks to live, but you can’t get over the bridge to make a baseline.

You’re too independent to be seen as impaired by the common neurotypical. But, you’re too autistic to be able to form and continue the relationships that would improve your quality of life.

That’s where I’ve laid for years, in the canyon.

I work an amazing job with people I love, but I never can tell if my social skills are going to get me fired.

I volunteer at a non-profit that’s my life’s passion, but I can never tell if communication issues that persist are on my side or a greater evil yet unseen.

For me, my main bridge is work. It provides stability, purpose, and the possibility to conquer the other bridges. But, it’s the only bridge I can be on without foregoing the space in the world I built for myself.

In particularly windy times, when my work bridge feels unstable and I have to sit before I cross any further — I look at what lies at the end of the other bridges.

By settling down and focusing on work, I have missed my teenage years, and will miss my early 20’s. Balancing so precariously has aged me in such a short amount of time.

Although I’m approaching 19, I’ve already retired in one field and want to settle down with a long term partner to start creating a baseline. I’ve been working since I was 13, and I will be working until I die. I don’t know if I’ll ever be able to cross any other bridge, and I don’t know if I can finish crossing this one.

I look below the bridges, gathered between the canyon walls — where the night reflects the remnants of my previous selves.

I see younger versions of me, still unabated by an autism diagnosis trying to find love, build companies, and assimilate socially at a high cost.

This is reality of balancing on one bridge: seeing the people at the ends of all the others, and not knowing if you’ll be able to join them. All while seeing the impact of your previous selves being unable to keep up with the people already at the finish line.

The true impact of autism is not in how it affects someone’s experience of the world. Many people with autism find others’ treatment is the most painful part about it.

The hidden impact is the stress associated with not being able to permeate through a world not build for us like neurotypicals.

It’s the inability to form, or understand relationships that seem to light the paths for everyone else.

For those without a baseline, it’s the standard of needing to keep crossing that without the relational or financial wealth it takes to recover if you fall.

In this way, autism and relationships act as opposing forces for people who don’t have a baseline. Autism requires relationships to permeate through the world safely. When those requirements are fulfilled, you’re able to become more autonomous and cross bridges safely.

If you don’t have that baseline, but you have independence — your autonomy can depend on the relationships you don’t have the balance to manage.

You need autonomy to be independent and have energy for relationships; but your autonomy depends on the relationships you already have.

When you’re stretched too thin, you lose the ability to uphold the coping ecosystem that provides your autonomy in the first place.

In a sense, we tend to focus the blunt of support for non-verbal autistic people with caretakers, as we rightfully should.

But, as our definition of what autism looks like expands, light shines onto hidden areas of inequity and where people get trapped in their quest to be autonomous.

One area happens to be this canyon, filled with glass bridges. Only once we understand where people get trapped on the bridge can we rescue them.

If the moon hits right, I can see people in the reflection of the glass floor in front of me.

Not only myself, but the other people who are just coming to know themselves as autistic. The people who have been trapped on this bridge for years without knowing why. The people who have yet to cross this bridge, but will find themselves in this situation.

Most importantly, I see people who rely on me, and who need me to stay around and get them to safe ground, as well.

The users I serve at the charity.

The orange face of my cat.

The friends I learn how to cope with autism alongside.

The people who I educate on autism.

I see those faces particularly in moments of stillness, when I can stop focusing on balancing.

That’s when I cuddle with my cat, make food for myself, when I ask for help or clarity, and the times with the people I loved and who I conquered a bridge to get.

In spite of being in the canyon right now, I know I will climb up. Not because I want to, but because there is something else waiting at the end of the bridge if I get to the other side.

Crossing the bridge is worth it for the ability to care for myself, so I can keep helping others, and to carve out a space for myself in the world.

Taking steps forward is hard. It’s asking for help, knowing when to turn around, and figuring out when to sleep at night. When I take those steps, I teach the bridge how to hold me up and to treat me. And when I fall, I learn what kinds of bridges not to pick.

I may not be able to exist in the world as is, but when I’m walking across, I’m trying to make a new one — where the person on the other end learns how to love me.

I don’t know if I’ll ever be able to cross all those bridges. I can’t say I’ll never fall off. I’ll stay in the pit for a little bit longer, until I can gather my strength to go again.

Holding the weight of my responsibilities isn’t easier through remembering these things. But it’s equalized with the strength of knowing what’s on the other end.

If I fall, I’ll get up, and continue to cross.

But across those bridges lies a future space I carved for myself without a baseline, so that I could build one. In a second space lies the possibility I can discover the path forward, and bring it back to the people getting ready to cross their own bridges.

That’s a possibility worth falling for.