Living as an Undiagnosed Autistic Woman—And How It Shaped Me

Growing up, I didn't know there was something fundamentally different about how I experienced the world. Sure, I was quirky—but so are lots of kids, right? I just thought it was my personality, and so did everyone else.

As a child, the world felt overwhelming. I was friendly and talkative, but I didn’t pick up on when people lost interest or when I’d said something inappropriate. I sucked on my hair at school, bounced my legs, rubbed my lips with my fingernails—all things I now know were stims, ways my body tried to cope with overload.

Sometimes, when I didn’t understand a social situation or felt too much all at once, I lashed out with nasty words I didn’t mean. I didn’t want to be cruel, I just didn’t know how else to cope. One day my mom said, “Emma, I know you're kind. Why don’t you show that to other people?” I didn’t know how to answer. But I tried. I shifted from verbal outbursts to silent stimming. Everyone thought it was just ADHD with a side of quirk. In truth, it was anxiety and sensory dysregulation—but I didn’t know that yet.

Socially, I tended to say things that were exaggerated, outlandish, and abrupt. I thought it was just my sense of humor, but most times it was a defense mechanism I used when I felt uncomfortable or didn't know how I was supposed to respond to something. Small talk escaped me: my version of it was asking someone, "What's the color of your toothbrush?"

I didn't know how to discriminate between situations where it was appropriate to say something and situations where it wasn't. If I would say it to my best friend in private, I would say it to a stranger in public. I didn't have a filter. This often earned me a reputation as being contrary, inappropriate, or brash. Subtlety escaped me, and I was left confused and hurt when people misconstrued my intent or my words. I wasn’t trying to be those things, I just didn’t know how to be anything else.

Academically, I was sharp. I picked up concepts quickly, but I couldn’t always focus. I often dissociated, completely unaware of the world around me. Teachers would call my name and I wouldn’t hear. My mind was off in another place, often inside the books I hyperfixated on. Stories gave me a world that made sense. The characters felt like friends. I physically couldn’t put them down, even if it meant missing sleep or snapping at family who interrupted me. I didn't know why I was angry. I didn't know why I couldn't stop.

I wasn't allowed to read in my classes, but once in math class, I put my novel in my textbook to try. I was genuinely surprised when the teacher called me out on it. He hadn't even looked. "How'd you know?" I asked.

"No one smiles and laughs at a math textbook," he replied.

Middle school offered the structure I needed, and I thrived. But that changed when I entered an early college program that replaced high school. Suddenly, structure disappeared—and I didn’t know how to build it on my own. I couldn’t bring myself to start homework. I knew the material, but I physically couldn’t do the work. I felt trapped. I didn’t know how to explain it except: “It’s like there’s a wall, and I can’t get past it.”

I was struggling with executive dysfunction, a common issue that affects many people with Autism or ADHD.

My mom became my lifeline. Although she didn't understand my struggles, she motivated me and pressed me to get things done even when it felt beyond my ability. She’d sit with me, help me get started, and gently push me forward.

At university, the differences between me and others became impossible to hide. My quirks, once seen as endearing, became targets. I still hand-flapped when excited. I drifted in conversation. I made inappropriate comments. I dissociated in class. I missed sarcasm and subtext. I was often the last to understand jokes. My roommate constantly pointed out how “ignorant” or weird I was. For the first time, I felt like I should be ashamed of how I was different.

That awareness was crushing. I didn’t know the rules for socializing or how to cope with the loneliness and self-doubt. I’d never learned to mask—because at home, my quirks were accepted or even loved. Now, I'd developed severe depression and anxiety. I could barely leave my apartment without having a panic attack.

I didn't know what was wrong with me. It felt like there was a physical presence in my body putting the worst thoughts and fears into my mind, weighing down on my heart, squeezing my chest, constricting my throat. I couldn't breathe or think clearly. I would lie in my bed and struggle to get up to go to class. "If you can just get out the door, you'll be fine."

It felt like I was suffocating when I stepped out of the house, like dying when I started driving. I rarely made it past the first stoplight before turning around and going home. That was the first time I failed a class.

I took a break from school and moved to Japan. Immersed in a new language and culture, I struggled in a different way. How do you learn to communicate subtly when you already struggle with social cues? How do you follow conversations when your brain checks out whenever someone speaks? How do you learn to do these in a new language when you can't do them in your own?

I eventually learned Japanese, but I never mastered the social nuance. I tried to mask, though “imitate” might be more accurate. When I didn’t know what to do, I’d ask myself, Who do I know would handle this right? Most often, I’d mimic my mom—her tone, her mannerisms, her friendliness. It was a poor imitation, but the best I had.

The thing about masking is that you're not always just fooling those around you. Sometimes you're fooling yourself, too. It's a matter of survival; you have to believe it. "I'm not afraid. I'm confident. I'm bold. I'm social. I don't care what others think of me. Look at how well I'm doing—I'm thriving. I feel successful."

How long can someone mask before they break? For me, it was about seven months. One moment every domino was carefully placed upright. The next, they all fell over. I faltered. Anxiety, depression, and self-doubt came crashing in. The confident, successful person I had conjured deserted me. In her place was someone who didn't know how to cope or function. My stims came out in full force. One of my more noticeable stims was obsessively stroking my hair and running my fingers through it while hunching forward and rocking a little. It had been pointed out to me by numerous people, and I knew it was strange, but I didn't know how to stop the compulsion. I didn't know it was my way of self-regulating. I cut off all my hair to "fix" the issue.

The hair-stroking and rocking stopped. The dysregulation skyrocketed.

I injured my back soon after this emotional collapse, and the chronic pain made it worse. Every sensation, emotion, and interaction became too much. I returned home to the U.S. for medical care—but I should have returned for my mental health, too. I wasn’t okay.

Back home, even simple things overwhelmed me. I remember nearly panicking in the car because the A/C felt so intense and painful against my skin. I couldn't breathe, my brain shut down. I remember hiding in a closet during a welcome-home gathering because the thought of so many people near me was unbearable. I didn’t come out until most of them had left. I couldn’t.

I didn't know I was autistic. I didn't know that I was experiencing sensory overload. I just thought something was wrong with me.

When I returned to school, I was diagnosed with ADHD and misdiagnosed with Bipolar II. The labels weren’t quite right—but they gave me access to accommodations and tools I desperately needed. I learned about executive dysfunction and how to work with it. I clung to routine. I listened to my mom’s advice: "Fifty percent is better than zero." I started to succeed again, but I still didn’t have the full picture.

It wasn’t until my sister was diagnosed with autism that I even considered the possibility for myself. I took the RAADS-R as a joke and scored 165. "Well that's not very high, is it?" I thought. Nuerotypical people rarely score over 64. "That's funny, because I'm not autistic," I told myself.

When I told my husband, he just looked at me and said, “Yes, you definitely are.”

I laughed. Then paused. I couldn't tell if he was joking or not.

“I’m serious,” he said.

It all started to make sense—my stimming, dissociation, struggles with social cues, difficulty with change, sensory needs. All the things I'd attributed to my ADHD or just me being "quirky” were classic traits of autism. I began reevaluating my whole life through this new lens.

At first, I felt exposed and embarrassed. I became hyper-aware of all my behaviors. But in time, awareness brought freedom. I finally had the words to describe my experience. I learned to meet my needs rather than mask them. I stopped fighting my sensory preferences. I stopped trying to dress a certain way just to fit in, and started dressing in ways that just felt good to my body. The joggers and baggy shirts I always wore weren’t laziness—they were regulation. Comfort.

My experiences and trials are not unique. I would even say that, for an autistic person, I had things pretty easy. I had a strong support system backing me, I had access to resources, I was smart in a way that was valued societally, and my stims were generally quiet and non-disruptive.

I still struggled to fit in. I still struggled to succeed.

Today, I’m still unlearning shame. I’m still figuring out how to navigate a world not built for brains like mine.

But now I know that there’s nothing wrong with me. I was never broken, just different. And through my struggles, I’ve gained something precious: deep empathy for others who feel lost, out of place, or “too much.” My experiences have shaped the way I connect with others—especially those who don't fit neatly into boxes.

Understanding my autism didn’t change who I am. It gave me permission to be who I am—and to offer that same permission to others.