Annie Kotowicz - What I Mean When I Say Im Autistic: Unpuzzling a Life on the Autism Spectrum

This is a pirated book.

Ive been where you areunable to afford all the books on my wish list, and unable to find some of them in my local library.

Someday, if you can, I hope youll consider buying this book. Buying a copy and donating it to a library would be even better, to help me reach more readers while still earning income as an author.

If you prefer to give me a small tip, you can do so at: neurobeautiful.com/patreon

Happy reading!

Copyright 2022 by Annie Kotowicz

All rights reserved. No part of this book may be reproduced or transmitted, except for brief quotations, without written permission from the publisher.

This book is not intended to diagnose, prevent, cure, treat, or modify any disorder, disability, disease, condition, or neurotype.

First Edition

ISBN: 979-8-9864827-1-2 (paperback)

ISBN: 979-8-9864827-2-9 (hardcover)

ISBN: 979-8-9864827-0-5 (ebook)

Library of Congress Control Number: 2022911768

Published by Neurobeautiful

neurobeautiful.com

Rockville, MD

Why This Matters

A Conversation with Little Me

How I Found Out Who I Am

How Autism Works

How It Feels to Feel So Much

How I Take It All In

How I Let It All Out

How I Get Along with People

How People Get Me Wrong

How I Reach a Tipping Point

How Else My Brain Is Different

How Im Creating a Better Life

How to Support People Like Me

How My Heart is Healing

Grateful Acknowledgments

Sources & Resources

More Possibilities

There are thousands of uswomen who discovered our autism well into adulthood, well past many of the memories it explains. Were too late in life to prevent a multitude of misunderstandings, yet too early in history to say, I am autistic! and trust that everyone will know what we mean. We need to unpuzzle the past to heal our hearts, and the present to see who we are.

There are millions of usautistic people of all ages and genders, trying to make ourselves understood, trying to survive as sensitive souls in an unwelcoming world. Were hardly ever fully at ease, and hardly ever fully ourselves. We need to unpuzzle our behavior so that people will recognize our reasons, and our rights.

There are billions of ushumans everywhere, with access to our own minds and no one elses, tossing one another songs and sentences to bridge the gap. Were endlessly experimenting with new ways to translate our experiences, and listening curiously as others experiment, too. We need to unpuzzle one another, and it becomes easier the more we unpuzzle ourselves.

Yet there is only one me, and this is my story. Not the whole story of a life, but parts of itthe parts that best illuminate what I mean when I say Im autistic, and the parts that were most puzzling before I discovered this crucial fact about myself.

Maybe youll see yourself reflected in these pages. Maybe you wont, even if you are autistic. Maybe youll see a palette of possibilities for what people you love might be feeling, or maybe youll doubt that I could possibly have a mind like theirs.

Maybe youll underline what resonates, and cross out what doesnt, before handing the book to someone else to understand you better. Maybe, like me, youve been wounded by the stereotype of autism as a puzzle, or at least the implication that were impossible to understand.

Ive spent five years trying to undo that assumption, writing posts and articles under the pen name Neurobeautiful. For two of those years, I also worked at a school where most of the students are autistic. There, I tried to figure out which of my experiences are caused by autism, and which are merely me.

I eventually concluded that theres no difference between the two. Autism affects all of my experiences, but it does so in ways that are unique to me. Others may be similarmore similar than we appear from the outsidebut no two minds are identical, even if we share the same neurotype.

In spite of the wide variety across the autism spectrum, I hope that this book will give you a way to interpret any autistic behavior through the lens of neuroscience. Ive applied my understanding of autism to personal stories, but this is more than a memoir. Its also a model of how autism works, a mirror of how autism can feel, and a manifesto celebrating the beauty of autistic brains.

Me: You look kind of grumpy.

Little Me: Yeah, a teacher was mean to me.

Me: What happened?

Little Me: I was using my hula hoop as a jump rope, and he yelled, STOP THAT!

Me: Wait as a jump rope?

Little Me: I mean, holding it in front of me, and stepping through, and then flipping it back over my head so I can step through again.

Me: Sounds fun.

Little Me: I do it all the time at recess, but he wouldnt let me do it in the hallway.

Me: Ah, see, that makes sense. Because you could hit someone.

Little Me: But he acted like I broke a rule! Nobody told me it was a rule.

Me: There are a bunch of rules that no one will ever tell you. Theyre called unspoken rules.

Little Me: Well, if it was unspoken, people shouldnt get mad at me for not knowing it.

Me: Yeah, they shouldnt. But Im pretty sure he wasnt as mad as he sounded. He just wanted you to stop right away.

Little Me: I think he was mad. I think he doesnt like me.

Me: He doesnt understand you, so he doesnt know how much you care about understanding the reasons for things.

Little Me: Unspoken reasons?

Me: Unspoken reasons for unspoken rules.

Little Me: Those arent fair.

Me: Theyre not, but youll get better at figuring them out over time. Its even kind of fun to find the patterns behind them.

Little Me: Patterns?

Me: Like, anything that might hurt someone is usually a bad idea.

Little Me: I know that already.

Me: But there are a million ways to apply it. And no one has listed all of them.

Little Me: I could! That sounds fun.

Me: You could, but the list would never be finished. Its better to learn how people think. Most of them think in a different way than you do.

Little Me: I know.

Me: You mean you know that its different. Someday, youll learn howand why.

As a child, I could already tell that most people experienced life very differently than I did. However, I suspected that there might be a few whose experiences were closer to mineor almost the same, if we found ourselves in identical situations.

Every once in a while I would spot a stranger, or sometimes a minor character in a movie or play, and imagine that she might be one of the humans who felt like me. I imagined us having similar motivations, reactions, memories, and perspectives.

I had a word for such peoplea Me. I would see them and think to myself, I wonder if shes a Me.

I eventually learned that it wasnt just my imagination. I really do see the world differently, and was trying to spot others who share my neurotypethat is, minds on the autism spectrum. I even labeled it correctly, since autism comes from the Greek word for self. Once I knew where to look, I found that the world is full of people like me.

In my mid-twenties, I met a new group of friends who understood me in ways that no one else did. They seemed to ignore societal expectations of how a person should sit, talk, move, dress, and act, freeing me to do the same. They also actively appreciated parts of my personality that others found annoying, such as my drive to clarify precisely what I mean.