I was one of those people who didn’t understand anything about autism before realizing I’m autistic, and that’s with a mental health education background. I could write A LOT about the ways in which I presented differently than the medical model’s expected behavior, but let’s start here with communication.
The medical model’s main premise of autism is that it’s rooted in social and communicative differences with a side of hypo and/or hypersensitivity. This… is not my personal experience at all. Yes, I have social and communicative differences but they’re because of my neurological differences. Those are mostly because I process and feel things so differently. It’s not that I act differently; my brain functions differently… and that impacts everything.
For example, autistics have hyper-aroused limbic systems, which means we are triggered into fight or flight (or freeze/fawn) MUCH more often. In fact, autistics are born with enlarged amygdala’s that we eventually “grow into”, but this means we’re basically predestined for chronic stress because it can start accumulating so early in life.
I have found an added layer which is that I’m PDA autistic – pathological demand avoidant or pervasive drive for autonomy – which is a nervous system “disorder” where my 4-F response is triggered by any demand, including internal demands like needing to eat, drink, and sleep. Things like questions and being put on the spot are incredibly distressing with PDA because of the expectation to respond appropriately.
Life is essentially a giant trigger for me whether it’s the demands of keeping my body alive and functioning by feeding, moving, and watering it or dodging seemingly innocuous questions and statements like “how are you?” or “I’m so proud of you” that stir up my adrenals. To say I have a hyper-sensitive nervous system would be… an understatement.
And when all of these things pile up, I shutdown. When emotions or conflict gets too heavy, I cannot help but to shutdown; it’s all my body and brain can do. It’s like a circuit overload that no one can see… I’m usually trying so hard to find words and get them out, but I don’t even know what I’m feeling half the time. When this happens, it’s like I’m in a tunnel waiting to come out.. waiting for it to stop so it’s safe to come out.
But usually there’s someone on the other end demanding words. Emotions. Answers. Something. The more people yell or demand answers, the further I get from being able to come out of the shutdown, which has caused even more trauma because no one understood why I was frozen… including me. When I’d process afterward and have answers and emotions, for most people, it was “too late.” I’ve had to apologize for so many of these situations – situations where someone backed me into a corner and then used my inability to react appropriately – my disabilities – against me. (If you’re reading this and you know me personally and you’re wondering if I’m talking about you, the answer is yes, I am.)
I’m not cold. I’m not uncaring. I’m not unemotional. I’m quite the opposite, but I’m also triggered easily and if you don’t give me room and space for my feelings, that’s how I’m going to come off in those intense moments. I’m hyper-verbal as a way to process everything around me until it hits a certain point; the point where there’s too much to process combined with interoception issues combined with the 4-F response. I literally don’t know how I feel or what to say. I need time to calm down, reengage with my prefrontal cortex, better regulate my emotions, and find my words.
But most of all, I need to not be villainized for this.
So yes, I talk a lot. And yes, I go into verbal shutdown where I am unable to find words. Two things can be true.
So please, if you know or come across people who struggle to communicate the way you want them to, stop pushing them; stop putting the onus on them to change who they are when there’s nothing that needs to be changed other than your level of knowledge, empathy, and understanding.
I’m not interested in prioritizing your comfort any higher than you’re interested in prioritizing mine.