Patreon members and YouTube channel members had access to this video on March 14, 2022. The video’s public release will be May 25, 2022.
Thumbnail image is of Lyric, a pale skinned nonbinary human, with short green hair and shaved sides. They are sitting in an RV with dark wood panel walls. In front of them the words “What’s It Like?” in teal and green text.
It’s important that we all understand, that as Autistic People, there is not a unified autistic experience. We all have different opinions and very different experience, and I think it’s great to share those things. If you’re a NeuroTypical watching, remember that this is just my experience as a NeuroDivergent Person.
Hopefully, this video will inspire other NeuroDivergent People to share their experiences as well, how they relate, and maybe even do not relate in the comments below. I encourage you to listen to, and read, as many Autistic experiences as possible to best understand Autistic People.
I would LOVE to see more Autism vlogs by #ActuallyAutistic People.
What’s it like being Autistic?
The answer to that question is going to change a lot, depending on the Autistic Person you ask… but I’m happy to share my experience with you this week.
Part of my own autistic experience is not knowing that I was Autistic for the first 29 years of my life, because I was not diagnosed until I was 29.
Other Autistic People, who may have found out they were Autistic earlier in life, are likely to have a very different experience than I did.
However, one thing that I feel I relate to with a lot of Autistic People, regardless of whether they were discovered earlier in life or later in life, is feeling this intense pressure from society to be a certain way, and act a certain way, and fit myself and do certain standards and norms, that often felt completely out of reach for me.
Though I did not grow up with the autism label, and the associated stigma of that label, I still had an Autistic experience of life… Even without having the language to describe that Autistic experience.
My strengths often were used as reasons to deny my struggles. Often I struggled with things that people around me took for granted as simple. I was lonely a lot throughout my life. Throughout most of my life, and my school years, I did not have the ability to read people’s nonverbal signals.
I didn’t know when people were uninterested in me or did not like me. If people said nice things to me, I assumed they were always nice intentions behind them. I didn’t really know people beyond what their words were.
When I was in workplaces, and I would have to go to networking events, I still could not read a group of people to see if they were receptive to having me walk up to them and introduce myself.
I kept being told, just go up and start talking to people, and I couldn’t read the room or the signal, and so I would go up and start talking to people who didn’t even want to talk, or weren’t receptive to me talking to them.
This has flared social anxiety in me. I’ve developed social anxiety throughout my life, as an Autistic Person, because of repeated social miscommunications, misunderstandings, and social failures, because I struggle to read the room, and read people, and understand people’s intentions.
It has made me so wary of being around, and developing new relationships with other people, that I almost don’t even want to try it anymore.
When I found out I was Autistic, I developed a very strong interest in human communication.
I’ve always had an interest in writing and sharing information. However, I struggle with getting that information out, when I am face to face with another person, or in a more relaxed, less structured, conversational setting.
For example, I do very well putting these videos out into the internet. I get to dump all of the information out there. There is no wondering about, “is it my turn to talk? Is it your turn to talk? Who’s turned to talk is it? Has there been enough time?” -all of these questions that are in my head when I’m trying to figure out how to talk, with another person next to me.
I’m always talking over people, and I don’t even mean to do it. I don’t even realize I’m doing it. I interrupt people. I, I don’t know how to people, and I don’t people very much. I am very reclusive. I hang out with a very, very small select group of people outside of the blog and the internet.
I am someone who has social anxiety, and so I am doing work, and putting out content, and teaching, and that is a very professional modality for me. Whereas if we’re going to go do socializing, and do something casual with no plan, no outline, and no rules of engagement… that makes my head spin. I do, however, like to go and engage in my interests around people.
When I would go to circus practice, and do hoop and flow arts, and all of those things… and when I would go to yoga, I would go and do the activity next to other people doing the same activity. I could go be around people as we were collaborating on projects, but that was because we had a specific focus, and the specific task we were doing… but if you remove the task, and say, “we’re just going to happy hour.”
Yeah… then I don’t, I don’t know what to do with that… because I struggle when you get so many people together in a room.
When is it my turn to talk? Everybody’s constantly talking. I feel like I get lost in large groups, especially around people that I’m not comfortable with… and there aren’t that many people I’m comfortable around these days.
My partner and I live in an RV. We are trying to stay away from people, for the most part. We don’t people very much. That is lifestyle by design. We are in our own little bubble, our own little world. That’s the way I like things.
There is a saying that you can be lonely in a room of people, and also I feel you can be fully fulfilled, even when you are alone.
I am filled by my interests and enjoy solitude. In fact, it is rare for me to enjoy a person’s company more than I enjoy my own company… and the company of myself alone, engaging in one of my special interests, hobbies, or passions.
You have to be pretty special for me to like you more than I like being alone, or like you enough to invite you into my solitude, because that is my happy place.
That’s why my circle is so incredibly small. That and the fact that I struggle to read and figure out people’s intentions, and I know that that means I am very vulnerable, when letting people in to my bubble, and starting new relationships. So I’m not particularly interested in having a lot of people in my life. That is just not something I crave.
When I was lonely growing up, and for most of my life, because I thought people would fill a void in me that I have now filled w- with myself with, with my passions, with my hobbies… With, with other things, that people weren’t going to be able to do for me anyway.
Another part of my, personal, Autistic experience is having very intense passions and interests. Sometimes my interests and passions are so intense that they get in the way of me doing other things, that I want to do, or my relationships with other people, because I’m trying to focus on one thing, but my mind is over here focusing on the other thing that is my passion… when I need to focus elsewhere.
Or… my passion becomes so hyper-focused on the one thing, that is if the rest of the world almost ceases to exist, and time slows down and changes in my head, and I may not realize that I have been engaging in my passion for many, many hours a day.
All the while ignoring other things in my life that are important, such as people, bodily needs -like eating and going to the bathroom – or taking care of adulting and other responsibilities, because I am too busy engaging in my passions, instead of doing the things I’m supposed to be doing in my life.
Yes, this passion can get in the way of things. Also, I can be so passionate that I really do learn some really awesome stuff. This passion though, sometimes describe just a big weakness of Autistic People… in my case, also can be my biggest strengths, because I get so focused on something, but I cannot let it go. It causes me to learn and solve problems, because I get stuck on things.
A very big part of my own personal Autistic Experience is dealing with a lot of sensory issues, and sensory processing difficulties. Certain types of lighting can give me migraines, vertigo, can cause me to get disoriented, and with enough continued exposure, cause me to have seizures.
Being Autistic means many of us have sensory processing and motor control differences. The sense of balance, and where your body is in space, are senses that can be impacted.
In my case, it means I have always bruising myself. Oh, there’s the bruise. Walking into doors, slamming my hands and arms on two things.
I have really, really, really poor hand-writing, and it physically hurts my hands to write with a pencil.
I’ve been obsessed with these little balls, because I am trying to improve my motor control. My hands have becoming even more shaky, as I age. Which is really kind of a scary thought to think that my control and dexterity of my fingers, which has never been particularly great, might even be getting worse.
Luckily for me, I really do enjoy playing with these glowy shiny balls, watching the light reflect off the inside of them, as I spin them around. It’s very fun and soothing, and it’s just a great way to stim with my hands.
Hopefully as I build muscle memory, I will see other benefits as well. Only time will tell on that one.
Contact juggling is quickly becoming one of my biggest passions, which is great because sometimes, for me, I find that it is the little things, that other people take for granted, that bring me the most joy.
So what’s it like being Autistic, quick recap:
I spend a lot of time on my own, engaging in my special interests, away from the world, being a recluse, sticking to the same routine, eating the same things, doing the same things.
Some people might say, my life is a little bit boring, as I spend all my time in nature, avoiding society, and not going out and doing the things that a lot of people think are important, but it works for me, and it is a style of life that gives me joy.
What is your Autistic experience like? What is it like being Autistic for you? Because each and every single Autistic Person, as I always say, will have a different experience of what autism and being Autistic means to them. I invite you, other Autistics, to drop your experience of Autistic life in the comments below.
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