How I Was Finally Diagnosed With Autism At 46
Why I’m grateful for my late-in-life autism diagnosis.
Omar Lopez | Canva Why is it so hard for me to function in the world? I watch you move through your day with an ease I can’t fathom. I watch you weave through crowds, pay bills, hatch plans and lay your heart to bear while I need to take an Ativan to survive a conference call. While I sleep above the sheets rather than beneath them — one foot off the bed, ready to run.
I see your heartbreak, trauma, a fall that seems bottomless, and how you slowly recover and I admire your strength, your impenetrability. Meanwhile, I feel like I’m trudging through my days. "You go at things so hard, hold onto things so hard," a friend told me once, and I couldn’t get the make of her. I kept replaying her words, re-arranging them because I couldn’t understand how one wouldn’t hold onto something so hard. How one wouldn’t … hard.
From an early age, I learned to study and mimic. Catalog a person’s range of emotions, reactions, responses, facial expressions — how they endure the world — and I copied it. For years, I party-hopped, socialized, hosted large events and parties, managed teams of 10, 30, and 100, and now the idea of walking into a room filled with people is unbearable.
I’m ashamed that I’ve learned to fake my way through the world without understanding why it’s so hard to live in it for real.
A few years ago, I read books, articles, scientific papers and studies, essays. I watched hundreds of hours of videos because this is how I get. When I want to know something, I want to know all of something. I’ll go into a deep that seems unreasonable. Reading about adult autism, the words I kept repeating to myself were: this is me.
Of course, I wasn’t silly enough to self-diagnose. I knew how futile, facile, and reductive that is because I see people throw the word “depression” around when what they’re describing is a tough time. They don’t seek out the advice of a medical professional or do the hard work to determine what is illness versus what is human experience, and I get angry because I want to scream into a screen: you don’t know how hard this is.
For a time I said, maybe I’m not autistic. Maybe I’m just a person who hasn’t learned how to function as a normal person — or perhaps a bit of both.
While I wanted to see a doctor because clarity has a way of healing wounds that refuse to heal, of course, the idea of scheduling the appointment, meeting a new person, and talking to said new person without the mask of normalcy I use as a crutch, being vulnerable and the exhaustion that comes after, kept me home. Until one day it didn’t. Until I returned to my psychiatrist after a long absence with an agenda.
I wanted to understand why I am the way I am. Finally, we weren’t going to talk about my mother.
In college, I was obsessed with a guy, who might have been interested in me before he realized I was obsessed with him. But before he regarded me as one would the Bubonic Plague, I was sitting in his dorm room talking and he said to me, "Why don't you ever look people in the eye? You’ve been here for two hours and you haven’t once looked me in the eye." I was confused. Did I need to? Was it necessary or required? He said it was as if I was purposely avoiding his gaze. In the moment I brushed it off and chalked it up to having a crush on this beautiful human until friends would say the same thing to a point where it made them uncomfortable.
I started forcing myself to look people in the eye; forcing eye contact came a muscle that I exercised until taut, until looking someone in the eye felt easy even if it made me wince every single time I did it.
Years ago, before I moved to Los Angeles, a man violently assaulted me in my home. I told none of my friends about it. Even to this day. (And if they do know, it’s because they read about it here, on this postage stamp place of mine on the internet.) But the day after I reached out to a friend with a different problem, how I was drinking too much, a problem that masked the assault. And I remember her driving. Every so often I could feel her staring.
It’s normal for me to tell a friend terrible things, horrible things, in the same voice I use to talk about the weather. It’s normal for me to speak while staring past her face, to the side of her, above and below her. Because the idea of connecting words with emotion to human contact is too much to bear. I can do one of these things, perhaps two, but three is impossible.
This is often why I shift between first, second, and third person in one essay because it’s another way of me not looking you in the eye.
I can tell you what I remember about a man pillaging and stealing things from me that can never be retrieved or returned. I can say the words calmly without emotion. I can write about the event in detail. But I will never look at you, in the eye, while telling you this. I’ll likely shift to the second person when I’m deep in the details.
A year ago, a mentor and I talked about the work I’d been doing, which amounted to data-driven ethnographies. I used AI and data to unpack language that determines how people think, buy, and behave. But what wasn’t brief was the slide deck I’d sent, which was 300 slides. My mentor laughed because she knew me well and knew brevity wasn’t my strong suit but she said, it’s incredible the work you’re doing, but it’s a lot.
While I realized my 300-slide deliverables or 50-slide brand platforms were a lot, I couldn’t imagine reduction or removal; I imagined it would feel like surgery. And while I understood people find immense value in the work I delivered they often felt overwhelmed by it.
Realizing something doesn’t erase the compulsion. Realizing something doesn’t assuage my need to know everything and my need to tell you everything.
After months of working with my therapist, I tell him it feels good to know things. How it’s magical to learn new things about yourself even as you plunge, head-first, into middle age. It feels good to understand me outside of the context of my mother, my life with her, her death, and the space between the two. I tell him while the diagnosis of depression made me depressed, learning more about my autism, gives me joy because now the world makes sense. Now, I can finally get acquainted with the real me.
Sometimes, I wonder how I functioned in an office for decades without screaming. How did I just get on conference calls all day long? I seize up even with scheduled calls with people I know and love. New clients? Cue the near anxiety attack. Deep breaths. Lie on the floor. Write scripts for calls and various questions and scenarios. Prepare.
Sometimes, I wonder how I dealt with people taking a hatchet to my work because we don’t need all the details, Felicia, without taking a hatchet to them. How do you not need the details, I stop myself from screaming.
I love wildlife. I’m devoted to true crime shows. I can talk to you about the caliber of a gun even though I’ve never held one in my hand. People with normal interests indulge in learning about them — I spend my life excavating them. And if I told my friends how many hours I spend watching videos about spotted hyenas or learning the habits of wolves, or the fact that I’ve watched every single American true crime show filmed in the past fifteen years, they would think me unhinged.
When I like something, I have to know everything about that something. And while knowing everything is impossible, my head will let me know what is enough. There’s nothing violent in watching hundreds of hours of African wildlife — it’s just … excessive. I write all of this with a show about a brutal murder streaming in the background.
Since I was small, I only wanted one friend. I didn’t crave a group, a crew, a circle, though I’ve had all of these things — I wanted one person because I found it exhausting to navigate group dynamics. I couldn’t relax because I felt I was always performing. Performing being agreeable, malleable, normal. But having one friend comes with an expiration date because people want room to breathe. People want legions, especially when they’re young and they’re trying to figure out who they are and the kind of people they want in their life.
I spent so much of my life wearing masks, feigning what I thought was normal, that I never actually figured those things out.
It takes me forever to make a new friend, to trust them, to get excited about spending time with them. Two years ago, I did what felt like the unthinkable — I reached out to an online friend, a writer whom I respect and admire, and asked if she wanted to get together when I headed back east. I’d even take a flight to meet her for a lunch date.
But then a stranger responded to my comment saying she was in the area and would love to meet up and I kid you not — I seized. I flushed. I deleted the comment, and the friend sent me an email asking what was up. Did I no longer want to meet? The only thing I could say in response was — LOL. I’m weird. How do I explain I freak out when someone interrupts or intercedes? Or when a stranger invites themselves into my space?
Given the option, I’m content with being alone. I like the idea of intimate lunches, coffee dates, and one-on-one hikes. I have strict boundaries; I’ve built walls around my heart, and I get defensive when people try to know me. I feel violated and invaded even though logically I know this is ridiculous. Logically, people are being friendly.
This is normal, Felicia, I keep telling myself. But my knee-jerk response will be to hold up my hands and tell them to go away. Because the masses are a monolith, entirely too much to handle.
Picture the space between you and what society determines is normal widening to a point where it’s a chasm that can’t be crossed or closed. Imagine knowing what’s acceptable and normal but feeling exhausted, frightened, or frustrated that it takes everything in you to do what others do so seamlessly. I’ve mimicked being social, being an adept networker, leader, negotiator, and executive.
Now, all I want to be is me. A woman with a tsunami of sensory sensitivities, a woman who not only colors outside the lines but creates a new coloring book. One where people can come as they are. One where someone isn’t deemed strange or weird but simply different. And that difference is more than okay, it’s beautiful. Given the choice, I prefer fewer people, quiet, a life I can plan for, and to spend hours watching a cheetah run.
Felicia C. Sullivan is the author of The Sky Isn't Visible from Here and Follow Me Into the Dark. Originally from New York, she lives in Los Angeles, California.