Patreon members and YouTube channel members had access to this video on January 20, 2022. The video’s public release will be March 2, 2022.
ID: Thumbnail image is of Lyric, a pale skinned nonbinary human, with short green hair and shaved sides (in need of a haircut). They are sitting in an RV with dark wood walls. In front of them the words What IS Autism (to me, one Autistic Person) and teal green text.
Over the past five years, there have been many videos breaking down different questions and parts of my Autistic experience, sharing some of your experiences, and talking about what it’s like to be an Autistic person, but every now and then I still get the question…. “Well, that’s great Lyric, but what is autism, exactly?”
It’s a question I dodge a lot of the times, if I’m honest, and that is because autism is something that’s very hard to quantify because… it is a lot of different things to a lot of people, depending on the lens through what you are viewing. For example, autism, when you ask the medical community is very different than if you ask an Autistic Person what autism is… or a parent of a newly diagnosed Autistic child.
Depending on who you ask, you’re going to get very different responses, and even asking and looking at Autistic Person to Autistic Person, what autism is within those contexts, and for each and every Autistic Individual, also, can be very different.
I, today, can only share what my experience of what autism is and what autism is to m; and if this is peaked your interest, I invite you to stay tuned as I dive in.
So what is autism to me… one Autistic person?
I would say that autism is an essential part of who I am, as a human being. That’s why I say I am Autistic, instead of “a person with autism” – because I feel as if that makes it sound like you could cut the autism out of me.
I truly believe that if I were not Autistic, I would not be the same person, because it impacts who I socialize with, my relationships, who I like, what I like, what I do, how I think, how I experienced the world, how I process information. It’s interwoven into how I interpret social contexts, and social structures, and hierarchies. It’s a very big part of me.
A big part of what being Autistic means, to me as an Autistic Person, is that my strengths and my weaknesses are often very different from that of the population around me.
When I didn’t know I was Autistic, growing up in the world, I didn’t understand why things that people around me said “were easy” were hard for me.
At the same time, because I excelled in certain areas around me, that my peers struggled with, I was often perceived as either not trying hard enough, or just not understood, when I struggled with something that everyone else around me thought was supposed to be simple.
Struggling with things that other people take for granted as easy made it very hard for me to appreciate my strengths growing up, because my weaknesses or so magnified, and constantly being called out and mentioned, under a magnifying glass, and the focus of everything. They didn’t leave room for me to appreciate my strengths and the ways in which I actually had talent.
When I was one and a half years old. I surprised the adults in the front seat of the car by reading out words from a map and reading street signs along the way on the road trip. They didn’t realize that I had been teaching myself to read.
By the time I was three, at a family gathering, one adult said that “speaking to me was like speaking to a real person” because I use complete sentences, and spoke like a little professor to which I responded…. “Why I am a real person!” Because of course I was real. What did he think? I was an illusion?
I had taken him quite literally, and the fact, is I always had this tendency, and still do… to take things quite literally.
Another example, a few years later, living in my grandparents’ home… my grandfather said he was going to draw me a bath. I ran to the kitchen and grabbed a pencil and a piece of paper. So he could draw me a bath.
Because I had an advanced vocabulary and read early, it was often used against me every time I had some preceived idiosyncrasy, that people didn’t understand. So when I brought the pen and paper, to draw a bath, it was assumed that I was too smart for that and was being a ‘smart Alec”.
Smart Alec was one of my nicknames growing up, along with Rebellious, Stubborn, Lazy, Difficult, and many more, that are even more harsh, that I won’t be repeating today.
To me, being Autistic means that I interpret social situations differently, and taking things literally, sometimes not understanding sarcasm, not picking up on the unspoken, and the subtle hints, that people around me like to drop, and needing things spelled out in plain simple, clear, language, that gives me concepts that I can easily visually.
That that’s a big part of my experience, that often led me to being misunderstood, and still leads me to being misunderstooD by people around me.
That’s what happens when you are in the NeuroMinority, surrounded by a NeuroMajority. Of people, that don’t think and experience the world like you do. Especially when you, and the people around you, all assume that everyone is NeuroTypical… and that’s what happened to me for a large portion of my life.
I assumed I was NeuroTypical, and so did everyone around me, and it had a huge impact, because I didn’t understand that, as Autistic People, many of us have social, emotional, sensory processing, and even communication, and cognitive processing differences… invisible differences, which is why I didn’t know I had them.
I didn’t know there were these differences, and different types of brains, and different type of thinkers. So when I would complain, and say “that light is hurting my eyes” or “the sound is bothering me” or “this texture on my skin is not okay” and people would say “it’s not that bad” – that their experience of these sensations was very different from my own experience.
They probably couldn’t comprehend either how much pain and discomfort I was in from the outside world.
The solution was to push me to stop complaining, but I needed to be able to speak up and assert my boundaries, but not knowing I was Autistic for, almost the first 30 years of my life, led me to having a lot of consequences.
And society pushing me to not think about my own needs over and over again, led to me having almost 30 years of chronic health problems, chronic migraines, sensory overload… all of these things, because I wasn’t taking care of myself the way my brain needed to be cared for.
Something, I understand now, that I wish I could have understood all those years ago was that I had a very intense experience of the world, and even though other people around me felt like I was overreacting to certain situations, or making a big deal of things that weren’t a big deal… the things that were not a big deal to the people around me were, legitimately, and should have been, a big deal to me.
Fluorescent lighting, for example, gives me migraines, sensory overload, and can actually lead me to having seizures. I know that now, but in the first grade, the first time I experienced the migraine from fluorescent lighting, when I went to the nurse several times within the first week of school, complaining about headaches, and did not have a fever, the nurse eventually told me that I had to stay in the classroom and I couldn’t come to the nurse anymore, and I couldn’t miss school. Which then led to me having 29 years of migraines… until I found out I was Autistic, found out about sensory overload and sensory processing, and how bad fluorescent lighting can be for some of us who have lighting sensitivity… and remove the environmental trigger.
Now I can’t tell you the last time I’ve had a migraine, but I was having weekly migraines, multiple migraines a week. Every day I went to the physical office, where I was working that had fluorescent lighting, I would have a migraine within five or six hours. They were just my normal life, because I had been pushed into the NeuroTypical box, the NeuroTypical expectation, that everything is okay, and I should just go to class, and act like it’s fine, because everyone else could do it, so I could too.
Being Autistic, to me, has often meant being forced into NeuroTypical expectations, because the differences in the way, my mind work are invisible differences.
One of the most painful phrases I’ve ever heard in my life, every time I hear it, it’s “everyone else can do this. Why can’t you do that?”
Trust me, I’ve noticed that “everyone else can do this” -I’ve noticed that “I can’t do it” and I don’t need anyone reminding me, but over and over again, throughout the years, countless times it is been stabbed into my soul.
It starts out with like a tiny little pinprick, you know, but eventually these little cuts, these little paper cuts.
You’re covered with invisible wounds. I’m covered with invisible wounds.
Being Autistic for a lot of years of my life meant having very low self worth, and not believing in myself, because I had been cut so many times, and been reminded of all the ways in which I “didn’t measure up” when compared to NeuroTypical people.
Not finding out I was Autistic until I was 29 meant, for 29 years, thinking I was NeuroTypical people, and I should be trying to measure up to NeuroTypical people.
That, that, that messes with your head… a lot. That’s, that’s a special kind of trauma, and I’m not sure the best course of recovery from something like that, but I’m doing my best to get there.
How do you recover from being the kid that other kids don’t want to play with? The kid who’s always picked last in PE because they’re uncoordinated, because I couldn’t catch a ball, and I struggled with team sports.
Then you get down to the end of your team, my team, your team, my team… and I’m the last one there… they still argue over where I’m going. You would think, “okay, I’m last I go to that team.”
“No, you take them!” “No! You take them.” “No, you take them.” “I don’t want them!”
Because part of my Autistic experience is, having issues with fine motor control, walking into walls and tables, being covered in bruises, and struggling to hold handwriting tools, and having bad handwriting, and getting in trouble for that in school. Until, eventually, they gave up on my handwriting and gave me a typewriter.
Typewriter, no backspace, no erase. You have a typo, you have to either use whiteout, or since you’re a little kid, and white out wasn’t kid-friendly when I was growing up, you’d have to start over and re-type your whole paper. But that was still easier for me than handwriting… and I can type really fast now.
That was like one of the most compassionate first, uh, accommodations they ever gave me, was taking away the pen and paper, mostly because the teacher was so inconvenienced, by trying to read my writing, that they didn’t wanna deal with it anymore, but I’m so grateful that I got to type.
I still type today. Hand writing is a hard pass. It hurts. It physically hurts my hands to write with a pencil. Please don’t make me do that.
A lot of things I was forced to do in school were terrible and unfair, and that’s where a lot of the misunderstandings started, because things I could do at home, naturally- get up and go to the bathroom whenever I needed to go to the bathroom… lay on the floor and draw circles with my feet and the carpet, while I’m reading, with my belly stretched out on the floor, grounded on the floor.
All of a sudden I have to sit in a desk, in a bright, loud, busy classroom. Sitting under the desk, something that… I could sit under a table and read at home… was something that, all of a sudden, I was getting in trouble for.
I struggled to stay upright in my chair, in my seat, in the classroom. It was darker. It was quieter. It was calmer. It was safer under the desk. I was overwhelmed and anxious, but that wasn’t noticed.
It was only spoken about in terms of my behavior. My behaviors! My Behavors!
I spent a lot of my education being sent out into the hallway, “go to the hallway” “go to the hallway” “go to the principal’s office” – “get out of here” “you’re disruptive!” “You’re distracting.” “You need to stay in your chair.” “You need to be still!” “You need to listen!”
Because the teacher wanted me to sit still. Quiet hands, quiet feet, eyes, looking, listening, and give my air quotes “full attention” to them.
But that’s not what my attention looked like.
I didn’t need to look at the teacher to pay attention to them, and in fact, looking at the teacher was faking attention, which meant I wasn’t listening and I wasn’t actually engaged, and it was completely counterproductive to my learning.
But when I couldn’t be quiet, sit still, not fidget, not flap, not move, I was described as having “behavior problems” because I couldn’t mimic NeuroTypical behavior… and I shouldn’t have been made to do that.
I don’t do that even now. I still don’t sit still, in the ways my teachers wanted me to sit still back then, and you know what the punishment often was? Taking away recess.
I needed more movement. I needed more physical activity. I needed to be able to get all that nervous, anxious energy out, that overwhelm out.
I needed to move, and as punishment for needing to move, often, it was restricting my movement even further… like creating a volcano and adding more pressure, shaking a Coke bottle, harder and harder… until eventually it’s just too much. It’s completely too much. There’s no, there’s no release.
Then, when I explode, my behavior is the problem… not that my needs weren’t met.
Having the world watching me, observing my behaviors, and talking about how much they don’t make sense, without bothering to understand why I am reacting in the ways that I am reacting… where those behaviors come from… not stopping to ask me how I feel about a situation.
It’s people making assumptions about me, and holding me to NeuroTypical expectations, over and over again… which sets me up for failure, because I am not, and now know that I never have been, NeuroTypical.
Those are my thoughts. That, that is it. That is what autism is to me, one individual Autistic Person.
This is not going to be what autism is to everyone. It’s my experience, and I invite you, if you are Autistic, to please share what being Autistic means to you… in the comments, or make your own video, “what autism is to me” because person to person, I think we’ll find that all of us.
Could define what autism is, to us, very differently. There’s not one unified experience of it.
Thank you all so much for hanging out with me this week. I am shooting this video in mid January, but this video will probably come out, hopefully, in March.
The Patreon members are going to have access to it later today, once I upload it.
I hope that you found this video helpful. I hope that you found it useful. If you’re still here hit that like button, cause I hope that means you liked it.
If you found it useful, hit that share button, because hopefully someone else will also find it useful as well.
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Thank you all for being here, for being in my world, for adding your comments, for sharing your perspectives, and giving video suggestions, feedback.
Also, thanks, before I forget, to the Patreon memners, YouTube channel members, Facebook supporters, who do that little monetary subscription.
On Patreon, it’s the most affordable option. It’s about a dollar a month… less, if you subscribe annually, and as a thank you, you get early access to videos like this one. As I said, this video, it’s now January. It won’t probably be coming out till March, but the PatrEon members will have it weeks in advance.
It’s just a little way to say thanks, because this blog is made possible thanks to the viewers like you, whether you are a subscriber, a sharer, a commenter, I couldn’t do it without you… each and every single one of you, I’m grateful for you being here.
Thank you so much. I will see you next week. Bye .
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With gratitude, Lyric