I’m No Longer “With Autism”

The other day, I was scrolling through Twitter (@fullspctrumview) when I came across a tweet by Beautidivergence that said: “I’m no longer with Autism! We have decided to make it permanent and I’m taking it’s [sic] name!!! I’m now an Autistic!”

Later that same day, I saw a vlog by Neurodivergent Rebel that was talking about why many autistic people prefer to be called an “autistic person” rather than “a person with autism.”

When I first started this blog, I didn’t understand the difference between those two phrases and why people would strongly prefer one over the other. I also didn’t understand the rejection of the puzzle piece as a symbol for autism. I love puzzles and thought it was cool. In fact, I had it as my original logo!

As I’ve become more involved in the autism community, specifically a community of people who are actually autistic rather than neurotypicals (you’ll understand the importance of that shortly!), everything I mentioned above made so much more sense!

From now on, I am an autistic person who is represented by the infinity symbol. Wondering what the distinction is and why it’s so important to me? Read on!

“Person with Autism”

Up until recently, I thought this phrase was okay, using it both on my blog and when I referred to myself. I had even read that it was considered offensive and demeaning to refer to someone as an “autistic person.” I don’t remember where I read this, so unfortunately I can’t cite it, but the premise was that a person is so much more than just their autism. 

To me, that argument made sense, on the surface. I am a dog mom, vegan, amateur home chef, hiker, backpacker, rock climber, sporadic runner, animal lover, Disney fan, and so on. I don’t tell someone, “Hey, I’m a rock climber with autism,” or at least not all the time. So, clearly I’m more than “just” my autism, right? 

The Puzzle Piece Symbol

Quick question: When you first think of autism, what comes to mind? If you thought of a puzzle piece, that’s probably what the majority of people reading this said too, unless you’re autistic. The puzzle piece symbol, seen to the right in case you have no idea what I’m talking about, has come to be known as the symbol of autism, made most “famous” by the “charity” Autism $peaks (and yes the quotes around charity are necessary as they seek to cure autism which cannot nor should not be cured, but I digress).

Once I began to self-identify as autistic, I adopted this puzzle piece symbol as my own. After all, the way I had survived in the world my whole life is by mimicking what everyone else did, so if everyone else used the puzzle piece, then I would too.

Plus, I thought it meant that autism was just a piece of my life, not my whole life. Also, I love puzzles, so the fact that my “disability” was represented by one of my favorite things to do was an extra bonus! Or so I thought…

The More You Know

While that phrase was made famous by NBC back in 1989 with an ongoing series of PSAs, it applies to a lot in life. In nearly all situations, the more you know about something, the better decisions you can make related to it.

That has never been more true for me than with my autism (other than being vegan, but again, I digress). As I started to learn more about autism, I realized that a lot of my initial sources were written by neurotypical, aka non-autistic, people. 

Now you might be wondering, “But Steph, why does that matter? After all, doctors don’t need to be diagnosed with the disease their patient has to help them treat it, right?”

And yes, you would be absolutely correct! However, let me give you an analogy that might help you understand why that rationale doesn’t really work for autism, because I love analogies!

The Brains of the Operation

Imagine that you brought your Apple computer to a computer repair shop that only works with PCs. The person working that day was very nice and agreed to take a look at your computer. They were able to tell you that it wasn’t working properly, which you already knew, and the only other thing they could do was give you ideas to fix it that would work for a PC. Not surprisingly, none of them worked, or were even possible to attempt, because your computer has a different operating system, a different brain.

That’s why a neurotypical can’t really understand how the autistic mind works: we’re running different operating systems! They can present their observations, but they can’t really get inside and understand how you interact with the world, nor can an autistic person understand how a neurotypical interacts with the world.

So what does that have to do with how I identify? Keep going, that’s coming next!

Sources of Information

Once I realized that for myself, I began to look at where, and, more specifically, who, I was getting my information from. Basically, if it wasn’t closely tied to an actual autistic person, I took it with a very large grain of salt. From my research, I also quickly learned that Autism $peaks was run entirely by neurotypicals, whomp whomp…

As I gained this new knowledge and started only reading or watching content created, or at least heavily contributed to, by the neurodiverse community, I started to see the problems behind the puzzle piece symbol and what the difference is between a “person with autism” and an “autistic person.” Once I did, there was no turning back. 

Why I’m An “Autistic Person”

So, I love hats. Not the fancy hats that people wear as a fashion statement, but just general baseball-style hats. I even wrote a post about why I love hats that you can check out here!

Why do I bring this up? Well, when I’m wearing a hat, I can take that hat off, leave it at home, change hats, or even stop wearing a hat for a week. 

Relating this analogy back to autism, if I’m getting ready to go do something that will be very stressful or challenging because I’m autistic, I can’t just leave my autism at home. If I’m in sensory overload, having a meltdown, struggling with executive dysfunction, or any other challenge that I deal with, I can’t suddenly decide, “Hey, this autism thing isn’t working today. I’d like to wear my neurotypical brain instead.”

Autism Is Me

Autism isn’t just a part of me, like the hat I’m wearing is a part of my outfit. It’s not something to figure out or solve, like a puzzle. Autism is me. Every thought I have or action I take is because I’m autistic. If I’m not masking and being authentically me, everything I do is shaped by my autism. It is my brain’s operating system.

And yes, some of you fellow techies and computer nerds like me might be saying, “But Steph, you can put a different operating system on a computer!” And you are absolutely right! But, have you ever actually tried it? Spoiler alert: it never runs quite right, at least in my experience.

So, I can seem “normal” and make it so no one knows I’m autistic, but it never goes well when I’ve tried. I do something that “gives me away,” makes people look at me, surprised by my behavior.

But, when I am the autistic person that I truly am, there is no “fake it til you make it, but you’ll never really make it.” There is just me being me and my brain being allowed to operate naturally using the AoS, or Autism Operating System™️

Also, I choose to identify with the infinity symbol, seen here in my logo, because while autism is a spectrum, it’s also a spectrum of infinite possibilities. Autistic people can excel in nearly every aspect of life. We can do basically anything a neurotypical can do, but each in our own way.

So, hi, I’m Steph, and I’m an autistic person. It’s nice to meet you!

Thanks for reading, for visiting the blog, and for any comments or questions below! I hope you enjoy your time here!

-Steph

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