literature

What is Autism?

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"Ella no puede hablar," says the cafeteria worker. She can't talk. This is false, but the young woman has learned to point to what she wants, instead of repeating herself over and over, uselessly ejecting quiet words again and again from her sparrowlike body. Her food is always the same: pink yogurt. Fruit crepe, strawberries, banana. A muffin, if she's hungry after that.
She sits down and rocks stiffly, her back hitting the soft padded booth behind her. Wham. Wham. Wham. She sits in the same enclosed corner every time; the same seat, if possible. She wears thick headphones with the song of the day on repeat. Wham. Wham. Wham.
She has heard snickers and smirks. She does not look at those people, or dignify them with a response. She just keeps eating. Wham. Wham. Wham.

What impressions might you have of this person?

I'm guessing that most laypeople and psychologists would label her with "severe autism." They'd say she's obsessive, with mindless rituals and routines, that she's not aware of how her behavior is perceived by others, that she will never have a semblance of a normal life, et cetera, et cetera, et cetera.

That person is actually me.

No, really. That is what I look like in the cafeteria. That is what I eat for breakfast each day. People actually did think, for quite a while, that I was nonverbal.

I'm imagining that some of you are giving skeptical looks at your screens right now, wondering how such an articulate writer could possibly look like this, so allow me to re-describe the scene.

I enter the center of the cafeteria, sucking in a deep breath. This place is always loud, and since the menu change, always brimming with spicy scents. It's nice that they've added more diverse options, but they seem to have forgotten autistic diversity. Even something as simple as pepper on my scrambled eggs can leave me crying or having a bad morning.
I scan the room, checking for the few foods I know won't light my tongue on fire. They took away the cereal options, so I'm thankful that they've started making crepes, since those are never spicy. (Have to avoid the blueberries though. Those squish in your mouth like a leafy water balloon of bitter mush.)
I gather my safe food and bite my lip as I approach the room's one quiet corner. My favorite chair, or the Autism Chair (as I call it in my head) has been taken. I like to have my back to a corner, so that nothing can surprise me. But that's not going to happen today. I breathe deeply and start rocking, trying to remind my brain to stay calm. They say autism is caused by a supercharged brain. All I know is that my brain has enough going on inside it, and I really don't need more.
I decided a while ago to stop caring if I looked strange. Predictable sensory input, whether its the rhythm of rocking or the beat of a familiar song, helps my brain focus on something that won't scare me, and it helps me block out things that might. Besides, maybe if other people see me doing it, they'll start thinking it's normal. Then maybe they'll be nicer to the next autistic person they meet.
Again, nothing changed between the two scenes. It's just that the first scene is limited to what I look like on the outside, while the second scene offers a window into my thoughts and feelings.

Why did I open with this? To show that autism looks very different from the inside than from the outside. To non-autistics, our behavior can seem strange, inexplicable, and pointless. But for us, it has meaning and reasoning.

If you're a non-autistic writer, you're always going to be on the outside. You aren't privy to what it's like inside an autistic brain, and the best you can do is guess based on what you see and hear. This can make writing an autistic character incredibly challenging.

The purpose of this series is to give you a look inside, so that you not only know what the symptoms are, but what they actually feel like. This way, you can write your autistic characters with much greater accuracy and understanding.

I'll go into several autism symptoms in depth. For now, let's take a look at some of the big ones, with some quick descriptions of how they feel on the inside.



What are the signs of autism?


An autistic person is going to have most of the textbook symptoms, but not all of them. These paragraphs are based on my autistic brain, and each autistic person is going to be different. I'm describing myself here, not every autistic person ever.

And, if you're curious, here are diagnostic criteria written by an autistic person.

Social confusion
If people were passing out social rulebooks, then they gave me one that had half the pages ripped out. I have a hard time knowing what to say or do, in order to get the outcome I want (e.g. "make friend not be so sad"). I don't always pick up on the nuances or catch hints. Basic calculus is easier than trying to figure out what my mom wants. No, really.

That isn't to say I'm incapable of understanding social rules. I just need explicit instruction. I find online guides, such as "How to Validate Someone's Feelings," incredibly useful. (I am a way better listener ever since I did research on that.) The good intentions are there, but the skills are not. Usually I try to play it safe and demonstrate as much goodwill as I can.

Atypical developmental speed (often delays)
I met my childhood milestones early (on average), although many autistic people are late bloomers. It's common to be a mix of late, early, or even out-of-order. I was early to talk, and on starting to walk. (A broken leg stopped that for a while.) I was late to learn to swim, bike, bathe myself, and make my own meals. My dad has been trying to teach me to drive for around 3 years now. Half of my barrier is fear that I'll get overwhelmed and be an unsafe driver.

Sensory issues
Autistic people can be over-sensitive or under-sensitive to light, sound, touch, taste, smell, movement, pain, and other things. I'm mostly over-sensitive, which means that I cover my ears a lot, because sounds that other people describe as "kind of loud" feel as loud as a foghorn going off directly in my ear.

Special interests
Writing, drawing, and autism are a few of my special interests. They're special because there are no words to describe the intensity of the passion I have for them. I know enough about autism to teach professionals in the field. Writing gives me this happy-floaty-excited feeling that I imagine is akin to what it's like to fall in love.*

*I'm aromantic. This is not an autistic trait, it's a lesser-known LGBT thing.

Executive dysfunction
This complicated symptom is roughly translated into "disorganization." Time management takes a lot of effort for me, and I rely heavily on routines to ensure things actually get done. Remembering to do basic self-care tasks, like eating, teeth brushing, face washing, and other things is a constant battle. I find it hardest to initiate tasks; thus, I try to chain them together when possible. (While I wait for my facial soap to soak in a little, I put the toothpaste on my toothbrush.) I also use checklists.

Need for routine
Routines can help with executive dysfunction. They're useful because (1) sometimes it's hard to find things that are "safe" in a world full of sensory attacks, (2) we don't have to spend all our mental energy on tons of little decisions every day, and (3) it can be comforting in an unpredictable world.

Stimming (repetitive movement)
Stimming could roughly be translated to "fidgeting," and it means engaging our senses. Rocking, flapping, pacing, humming, finger flicking, and playing with fidget toys are examples of fidgeting. We might do it to block out other sensory input (e.g. a loud cafeteria), calm ourselves, focus better, or express our feelings.



Why do you use the language that you use?


The Autistic community uses certain language in order to refer to autistic people in a respectful way. I will use appropriate language throughout the series. For those of you who want to know why, and want to use respectful language in your writing, here is how it works.

Autistic person, not person with autism


If I told you I had a "friend with deafness" or a "friend with awesomeness," that would sound weird, right? I have a deaf friend and an awesome friend. This phrasing is called identity-first language.

Here are a few of the reasons why most autistic people prefer identity-first language:
  • Because we use identity-first language for almost everything ever. I'm a blond person and a woman, not a person with blondness and femaleness.
  • Because autism can't be meaningfully separated from our brains and ourselves. (More on that later.)
  • Because person-first language (person with autism) implies that autism is somehow shameful or in conflict with our personhood, like it's so much worse than being blond or female.
  • Because if you're ignoring what real autistic people have to say about how we want to be called, are you really putting the people first?
Want to read about the reasoning in detail? Try reading about it here, here, here, and here.

This is what most autistic people prefer. Occasionally, you may run across a person who prefers to be called a "person with autism," and there's valid reasoning for that too. Always respect what an individual wants.

No use of "high functioning" or "low functioning" labels


“The difference between high-functioning autism and low functioning is that high-functioning means your deficits are ignored, and low-functioning means your assets are ignored.” Laura Tisoncik
Would you say that you have a lot of skills, or that you struggle with things?

I'm going to use my autistic mind-reading powers and guess that you're going to reject this dichotomy and say "both."

Okay, I lied. I don't have mind-reading powers; it's just that the answer is really obvious. We are complex human beings, and everyone has both skills and needs. We don't want to be defined only by one, at the expense of the other. We want people to appreciate our abilities, and help us with our needs.

That is why we don't usually like to be called "high functioning" or "low functioning." These binary labels aren't particularly helpful, and they can erase the parts of us that still have needs and talents. You can read more here, herehere, and here.

Instead of slapping these labels on myself or others, you'll hear me describing unique skills or needs as is relevant.



Neutral language


I'm not going to talk about autism as something causing "suffering," "illness," "affliction," "disaster," "disease," et cetera. I won't use puzzle pieces or puzzle analogies, which are associated with this type of attitude. I won't act like my existence, or the existence of other autistics, is a terrible burden upon our poor victimized parents.

I also won't call it a "miracle," "blessing," "wonder," or "gift bestowed by the heavens."

Autism is a mixed bag. My life is super awesome sometimes, and incredibly hard sometimes. If I acted like it was only one of these, I wouldn't be giving you reality. I experience the full range of emotions like anyone else. And I will never blame autistic people for being autistic. (I'm looking at you, Autism Speaks. You are cordially invited to sit on a cactus.)

Read more about how negative language affects autistics and our loved ones here, here, and here.


Diversity makes the world awesome!

In Conclusion


"Good writers borrow. Great writers steal." T. S. Eliot (at least, we think it was him)
Anyone can look at an autistic person and say "oh, this is what's going on." But there's a good chance they'll be wrong, even if they are psychologists, especially since autism is such a complex disability. I'm going to give you a window into the autistic experience, so you can learn what it's like. I want you to read my experiences with your character in mind, and start stealing. Chop up my experiences into little pieces, pour them into a blender, and mix it all together into your own character.

I also feel that it's important for you to read what other autistic people have to say about autism. The thing is, autistic people are incredibly diverse (at least as much, if not more so, compared to non-autistics). Different autistic people are going to have different experiences than I do, and reading their writings will help you get the full picture of what autism can look like.

The internet is swimming with information on how to write disability well. We have letters to writers, online discussions, articles, and so much more.

The more you read from autistic people, the better you'll understand us. The better you understand us, the better your autistic character(s) will be.

So get ready to steal.


I do not condone literal theft. Please do not actually steal things.

Comments & Content

This series will discuss diversity and human rights, including LGBT+ (especially transgender/nonbinary) people's identities, the effects of bullying/abuse (including in ABA), and the right to be yourself (that autistic people also have).
  • If you disagree with these fundamental topics, this is not the place to spout an essay about it. Comments will be moderated. This is not a place to test your theoretical debate skills using the rights and experiences of real people. Take your freedom to be a jerk to Reddit or a YouTube comments section.
  • The comments section is meant to be inclusive towards LGBT+ people, autistics, abuse survivors, and others.
  • Some parts of this series will talk about difficult things.
  • Disturbing material will be marked appropriately, to the best of my ability. Read mindfully, don't be afraid to skip sections if needed, and take care of yourselves.

Here are some other descriptions of autism from autistic people:
© 2016 - 2022 MissLunaRose
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RavynAbyss's avatar

As an autistic person, I absolutely loved reading this. So many times people assume because you're autistic you can't do this or that. Or they simply believe you to be stupid. I absolutely hate how people judge based on what they believe to be normal. Noncommunicative or not, it doesn't make the person less smart than what is considered normal. They just have a hard time communicating because of sensory overloads. Love how you explained stuff, so it was easy to understand too. Job well done.