Who Am I?

Autistic with Complex PTSD in a Global Pandemic

Posted: March 17th, 2020 | Author: | Filed under: Autism | No Comments »

As this crisis unfolds, I find my mind and body both feel in this somewhat eerie, staticky space. It’s a familiar feeling to me, though something I felt more frequently in the first half of my life than the latter half. I’m beginning to recognize some of the ways my autistic childhood experience intersected with my unreliable and often traumatic home experience to produce my particular defenses and coping mechanisms.

My childhood autistic experience was awful. At any moment, any interaction with any person, peer or adult, could go badly wrong up to and including verbal and physical assault. It wasn’t some group of bullies the way most people describe experiences of bullying. My friends sometimes abruptly turned on me. I’ve related some of those stories in the past. The first time I was placed among peers in a less structured context in kindergarten, it got so bad I had to be moved to a different school. And while some adults tried to be helpful, others were a nightmare. I guess they found me threatening in some way? I’m not sure. And that experience followed me everywhere we moved, and we moved frequently, and in every group I tried to join. I know now that I could not see and interpret the social cues that indicated things were beginning to go poorly. But to child me the world of other human beings felt wildly unpredictable and dangerous. It’s why I worked so hard to “fix” myself as I’ve described in other posts. It’s what drove and formed my will and determination.

That broader autistic experience merged with a home life that by any measure was wildly unpredictable and sometimes overtly abusive and neglectful. My earliest memories are deeply traumatic and that never really changed. Every time I began to feel like some sort of stability might be developing at home, the rug was pulled out from under me again. That’s how a child ends up with 9 out of the 10 adverse childhood experiences in the original ACEs study. They don’t happen all at once. That number represents an accumulation of trauma and adverse experiences over the course of an entire childhood.

In that light, I’m not surprised that a number of the symptoms I have managed, though not necessarily managed well, my whole life meet the criteria for complex PTSD. I never feel safe in no small part because my body and mind don’t know how to feel safe. I don’t even really try. I just try to keep my environment as managed as I can. And for me that often means trying to appease and calm the people around me. I need and desperately want connections to other people. Yet I struggle to maintain those connections. And people are also often the greatest source of fear for me.

My trauma therapist called me an empath the other day and it feels right, I guess. But I can’t even parse my own flood of feelings much of the time, much less everything I pick up from my environment. It often feels more like an undifferentiated wave or an inchoate mass than individual emotions. I sometimes handle it by dissociating from my body and even dissociating more or less completely. There’s a part of my mind that seems to be good at walking me through actions I have to take even when I’m not exactly present. It’s hard to describe, but I think part of it is because I never had the safety to fully dissociate even when what I was experiencing felt overwhelming.

All that combined to produce my particular ways of coping with the world. I’ve described elsewhere how, as I learned to feel and interpret my body in therapy, I recognized my default state was not calm. Rather it was more like what people often describe as anxious. As I’ve explored it more, I’m not sure that’s accurate. I think fear is a better word. My body is always somewhat afraid and that can quickly ramp up to terrified, usually when anger or similar emotions are directed at me or I have no idea what is happening with the people around me. I can tell things are ‘off’ but have no idea why or if it’s because of me.

And that, in turn, means my mental horizon is always pretty low. It’s why I struggle with questions about things I want to do, dreams I have, and plans for the future. I largely never developed those except in the vaguest of terms. My horizon starts with what I need to do today. Then raises some to keep track of the things that are coming in a week or month. Then I have some sense of demands beyond that point, but they are more tenuous and I don’t spend much time or mental resources on them beyond noting their existence. I place a great deal of emphasis and attention on what the people who depend on me need me to do.

And that means I don’t experience fear and anxiety the way many people seem to experience those emotions. I hardly ever catastrophize. That requires thinking about the future and I just don’t do that very much. I can spend a lot of mental energy on past interactions, but what I’m doing is trying to understand them so I know what went wrong and how I can repair it or at least avoid future recurrences.

And when a crisis does hit, my mental horizon narrows even further. Under duress, it can narrow as much as looking around, deciding what I need to do or can do right now in the moment, focusing my energy to do it, then looking around and figuring out what the next thing I need to do is. It’s why I cried during Anna’s song, “The Next Right Thing“, in Frozen 2. That song captures how my whole life has felt.

I think that’s why people have called me ‘good in a crisis’ or have commented how I seem to stay calm when everyone else is freaking out. The reality is I’m never truly ‘calm’ and ‘crisis mode’ is more or less my normal. It’s simply a matter of degree for me. I can be overwhelmed and when things break for me it’s not been pretty or pleasant. But up to that point, I seem focused and in control.

I don’t want to give anyone the impression it’s some sort of calm, Zen-like state. It’s not. Rather, I’ve lived every moment of my life waiting for the metaphorical “other shoe to drop” with all the hypervigilance, tension, and struggle that implies. It does mean I often process the shock when that unexpected shoe does drop faster than those around me and move directly to action.

Living in a state of constant high alert definitely impacts my relationships, my health, and my well-being. It’s likely why I have such low motility in my intestines, which led to my health crisis and almost death a few years ago. I tend toward silence when I have no idea what to say, which people often misinterpret. And living every day in survival mode is exhausting in ways I can’t describe. It’s why I haven’t really been attached to being alive since I was nine years old, at least on my own behalf. I learned to keep that under control and have many tools to manage it, including always keeping in the forefront of my mind how much others do still depend on me. But it adds to the pile of things I manage every day of my life.

Nevertheless, it does mean when a crisis of any size hits, I’m as mentally and emotionally prepared as anyone can be. I absorb all the information I can and my autistic brain systematizes it for me. Things that don’t fit stand out. Reliability has a certain mental feel to it for me. I’ve always appreciated the way my brain does that for me. I don’t know how I would get by without it. I figure out what action I can take right now. I do that and start figuring out the next action required. Rinse and repeat.

I suppose that’s helpful? But honestly, I think it would be nice to feel safe sometimes. I’m so very, very tired.



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