Wow, ok. So, I am going to be real here. This one is hard.
It’s hit me, after editing and re-editing this post (and writing several iterations), that the difficulty is centered around my fear of not being believed.
The experience of not being believed is central to the autistic lived experience. Especially for those of us who have discovered our autism late and who have adopted masking as a survival strategy.
(for those of you reading this who do not know what masking is, Wikipedia defines it as “a process in which an individual changes or “masks” their natural personality to conform to social pressures, abuse, and/or harassment.”)
So, I will attempt to share a bit about what autism looks like from my lived experience. But, I will be honest. This is going to be tricky.
If you are neurodivergent, welcome. I hope this post speaks to you in some way. If you are neurotypical, I ask you to keep an open mind.
In a nutshell, the view from inside looks like constantly tripping over my feet (literally as my proprioception is poor), being socially challenged and anxious, running after my life like a bus that left the stop moments before I got there, experiencing the world with all of the senses turned up to 11, and having difficulty emotionally regulating because all of this is happening at once.
Add to this the unintentional gaslighting of the allistic (non-autistic) people around me convinced that I am exaggerating my experience or just need to try harder as well as the intentional bullying and downright abuse from some and the toll on my mental health may become apparent.
I have sensory differences which cause me to experience the world more acutely and need to be more aware of the environments around me. When I cannot manage these needs, I experience shutdown, meltdown or burnout.
My life is dominated by missed appointments, lost keys, chronic lateness, and a struggle with basic tasks like household chores and personal grooming thanks to poor executive function. This is as exhausting as it sounds and a great source of shame for me. A dirty little secret that I have been attempting to hide with varying degrees of success.
A great deal of my difference is centered around the fact that my eyes, face and voice do not naturally do what others suppose they should. My flat affect, inappropriate facial expression, tone of voice, or lack of eye contact are seen as rude, intentionally unkind, and/or filled with subtext when none of these are my intention.
I struggle to understand people. In truth they baffle me. They are such a mix of contradiction and unpredictability. I can never be sure if what they say is really how they will behave. I am lousy at reading others intentions, and even when I can see red flags, I have difficulty seeing how to extricate myself.
I have always understood and felt far more than I was able to express. Often, the higher the stakes or the more emotions involved, the less successful I become at expressing myself. (thus the writing and rewriting of this post.)
But these are just the ways that I find my differences challenging, and many of these have to do with how others are perceiving and responding to me.
The view from the inside is that I am shy. I am vulnerable. I am caring. I have a rich internal world that often takes up much of my attention. I am a good friend. And, when my needs can also be brought into the relationship, I thrive in it. I have a deep sense of integrity and loyalty. I have incredible empathy for others and care much more than it shows sometimes. I need longer to process than others because I often don’t know exactly how I think and feel about things in the moment. I tend to think in absolute and concrete terms and have a hard time being flexible especially in areas that confuse or frighten me. When it comes to what I believe is right, I have very little patience for listening to others’ differing opinions. It can take me a long time to realize when I’m wrong about something, but when I do, I will work very hard to make it right.
I have a singular mind. I have no genius IQ, but I can see the big picture and make connections others miss without losing the details. I have the ability to hyperfocus and enjoy it when a project I have been putting my heart and soul into, is completed with excellence. I like the way I think. I wish there was a way my mind could be valued in our world because it could contribute so much.
Something to understand is that my autism is not a problem for me. I quite enjoy the way I think and how I experience the world. There is beauty in it. For me, the world is full of wonder and mystery set to music in my mind seen as patterns forming from the void.
It is the intolerance of the neurotypical standard and its assumptions, exclusions, and punishments which cause me pain.
So… I may always trip over my feet at nothing, but I can be kinder to myself about it. I may always be socially challenged, but I can now educate those around me (and limit contact with those who can’t be understanding). I may always run after my life like a bus that left the stop moments before I got there, but I’m learning to change the standard I’m attempting to live up to. I may always experience the world with all of the senses turned up to 11, but I am stimming and putting my sensory needs first. And, I may always have difficulty emotionally regulating, but, at least now I know why. And, just maybe I can ask for some understanding.