I had been sinking silently beneath the brilliant blue-green waves of a storybook when I was brought sharply back to reality by a pointed order. Disapproval rained down on me from above and embarrassment swirled inside of me with my speeding pulse.
I felt…hot. Too warm and too enclosed. Like my skin was stretched too thin, too tightly around me. My mind felt like a clogged garbage disposal, everything too bright and too loud all ground up inside of me with nowhere to go. Every fiber and texture scratched and tore at me, driving into my brain with every touch. I couldn’t process it all. Everything was coming in all together leaving me drowning in sensation as my mind and body we’re left incapable of tuning out the slightest thing.
Florescent lights above flickered and hummed. I flickered too, coming in and out of myself in pulsing waves.
Out of myself.
Out of myself.
Out.
I wanted out. Out of it all. Out of this room with too many eyes and too much everything. With the scratchy chairs and the incessant flickering. I wanted to run away, screaming for the outside that was quiet, warmth, and open spaces. Open skies and maybe, just maybe, one day I could fly away from the mess of me that it all had made inside.
All I wanted to do was pretend I was somewhere else. To spend as much time as I could pretending to be in this magical, wonderful place where the world was just…different.
A world that was all my own.
Free of all of the noise, complexities, and the constant crush of people all around. My sister at my side gave me a nudge. A silent frown asked, ‘are you okay?’.
A shake of my head.
No. No, I was not at all okay.
My hands were shaking, eyes burning, stomach churning and mind reeling. But most of all? I was…scared. Scared of fucking everything because everything was too much. Everything was too close, too rough on my skin, too bright, and too painful. People’s brushes against me in a crowd were like electric shocks. Sound poured into my ears with all of the gentleness of a tsunami.
There was a tight, hard knot in the back of my throat that was unmoving and defiant.
On the outside, though… On the outside, I had to be…Absolutely. Fucking. Still.
It was as if no one around me could possibly see the storm on my insides if I stayed as still and silent as a statue.
If I didn’t move, they wouldn’t notice I was here.
During moments like this, you know that doesn’t make the slightest bit of sense. But its as if your brain only knows fight or flight in that moment. All you can think about is how to escape, whether it’s lashing out at someone to get them to leave you alone or literally bolting from the trigger.
You just want to get out of the public eye as quickly as you can before someone sees the last cognitive functions you possess crumble to nothing. Before they see you break into girl-sized pieces.
You’re a sheer, wet piece of silk wrapped tightly around a mass of brambles and thorns, trying desperately to hold it all in before your skin tears apart.
Meltdowns are terror and confusion and pain and exhaustion all in one. Worst of all, though, is the shame that comes afterward.
The horrified embarrassment.
All of the ‘you’re a grown ass woman, you should be able to handle this!’ or ‘you’re not a child anymore! Act like a fucking adult and calm down!‘. Sometimes even, ‘Why is she even here if she can’t handle a simple interaction?’ or ‘And she wants to be around kids? Should she even be allowed?’
That one always gets me. As if, just because I have different sensitivities or wiring, that I’m somehow incapable of caring for a child. That I have no right to possibly pass on my Autism. That I need someone there to oversee me so I don’t accidentally put the kid in the oven instead of the bassinet or something. Ridiculous.
Children are simple. Understanding. Accepting.
It’s the adults that are the problem.
God forbid we have to leave a place or stop an activity because of a meltdown. The shame is nigh unbearable then. All I want to do after is hide under my blankets alone and cry. Sometimes I would.
The older I get, the easier it is to manage. I suppose that is, in large part, due to the three years of Occupational Therapy, two different anti-depressants (even though they are actually prescribed for nerve pain and gastroparesis), and two different rounds in therapy to help me learn the coping skills I have today.
I don’t work anymore, which I’ve found to be an indescribable blessing that many women aren’t able to claim. I can stay home and sink into my special interests, spend time with my favorite small person, and hide away from the worst of my triggers. Working directly with the public had destroyed my ability to “pass” or to pretend to be neurotypical. It took me the entirety of my pregnancy and then some to get to a point where I was going more than a week without meltdowns or panic attacks.
If you are neurodiverse, retail is not for you. Stay very, very far away.
But, despite it all, I got there. I got there thanks to my amazing medical team. I got there thanks to my phenomenal family and support system.
Now, I’ve finished all of those years in OT, with my wonderful therapist, as well as three stints in physical therapy. I’m as healthy as I can be given my rather poor health and I like to think that I’m thriving.
Yes. I’m thriving.
However, not everyone is. There are so many of us out there.
Women with Autism like me.
Most don’t have the blessings of a partner who’s income allows them to stay home. Many don’t even understand why they’re so different, why doing and being is sometimes so, so hard. It’s getting better, slowly year by year, but it isn’t enough.
For every girl who goes through their lives unaware and so hurt and confused by her own self, that’s a failure. It’s a wrong committed that yearns to be righted. Obviously, we can’t identify and diagnose people. That’s for the doctors. What we can do is to be understanding. If you see someone struggling in a situation, even if you can’t understand why their upset or reacting the way they are, be a friend. Step in if you can.
Choose kindness over reproach.
Helping over commenting.
Affirmation over annoyance.
Acceptance over Awareness.
When you live that way, all the time trying to pass as “normal”. You get so very good at mirroring. Mimicking and blending in, always being on guard to adjut your behavior and mannerisms so that you seem just like everyone else. You create a mask, you change your colors to the same shade as the crowd. Eventually, you realize that you’ve passed so well and for so long that you don’t remember who you are underneath it all. When you try to stop, you realize that you can’t
It can take years and years to dismantle the mask, to find your own brilliant hues and shades again.
Let’s work towards a world where girls and boys, men and women, anyone and everyone, where no one ever has to feel the need to pass again.
Choose patience and compassion. Help us bring the girls lost beneath the masks back into the light. Help bring the lost girls home.
With Peace and Passion.
Ta!
Little Journeys Everywhere 