Hi, I’m autistic
On late diagnosis and self diagnosis and living a life without knowing who you really are
No one has ever understood me.
In my whole life, I’ve never been in a room that felt full of people like me. I’ve gotten close. I’ve found rooms of editors who share my obsession with language and communication. I’ve found pockets of Democrats in my small, conservative town. I surrounded myself with stand-up comedians for years because it felt nice to be among misfits.
But something in me has always been off. I’m not doing the right kind of work, I’m not from the right kind of family, I didn’t have the right kind of education, I don’t have the right kind of ambition. Something’s always kept me apart from the people around me, no matter what connects us.
I know most people feel this way sometimes. Or some people feel this way a lot of the time. Or, I don’t know, maybe I assume this is how everyone feels because I can’t imagine feeling any other way. I pushed the feeling off for years, because I didn’t think it meant anything. I’d felt this alienation my whole life, so it just seemed like part of being human.
Then people started naming things about me I’d never paid attention to before.
On TikTok, on podcasts, in newsletters — people were naming traits I shared, isolating the characteristics that had always made me feel odd, offering labels and explanations (and praise!) for things I’d been reflexively suppressing.
How I have to concentrate so hard to maintain eye contact.
My visceral need to propose a solution to a problem when all you want to do is vent.
The way I understand new subjects by recognizing patterns they share with unrelated things.
How I take in every detail of a person’s hair, teeth, smile, jewelry, clothes, shoes and hand gestures, but can never remember their name or pick their face out of a line up later.
My tendency to blurt secrets because no one told me not to tell.
The fact that all of my friendships start with shared work.
My intolerance for small talk.
The way I work best when I’m in a room next to others who are working on their own thing.
How my favorite dates looked more like interviewing someone for a research paper.
The way I’ve always said, “I don’t necessarily care what someone’s into, I’m just attracted to people who are passionate about something.”
My comfort with hierarchy.
The way people think I’m questioning authority because I ask “why” a lot, but actually I just want to know… why.
How my face responds to things even when I try not to.
How I worried about getting too into the Spice Girls when I was 12, because I was a Hanson fan, and I thought liking other groups made me disloyal.
The act of changing my clothes at least three times every day to adjust to changing temperatures and activities.
How I can bring any conversation back around to writing, language or communication.
The way I’m always asking, “Does this smell weird to you?” and no one ever smells what I smell.
How I did basically nothing but read from age 3 to 18 but got C’s in English class.
My tendency to pass out in crowded rooms.
The way “networking” exhausts me, but I can have a conversation with one person for four hours straight.
These, I learned, are autistic traits.
I took my first online autism test around 2018, when I was 32 years old. I took it on a lark, not because I thought I could actually be autistic. I scored just below the “you might be autistic” range, laughed a little, and didn’t think about it again for a couple of years.
Then I got on TikTok in 2020.
Creators identified as autistic and described their traits and experiences, and they were so familiar. (Remember how the early TikTok algorithm knew you better than you knew yourself?)
I took another online test. And another. And another. I tried several tests, and I took them over and over again. A couple of years older and more fully attuned to my inner life in the midst of pandemic-spurred isolation, I got higher scores. The same results, again and again. I was solidly inside the “you might be autistic” window.
I started to jokingly adopt the identity with my partner, and he quickly noticed how much it wasn’t a joke. Autism explained so much about our experience together, our communication styles and challenges, the quirks and idiosyncrasies that enamored or irked him. With his validation, I adopted the identity with less trepidation — but only around our house.
Like many late-diagnosed folks, autism became one of my special interests. I read Unmasking Autism by Devon Price. I listened to the Autistic Culture podcast. I watched Love on the Spectrum on Netflix. I followed autism influencers on social media. What really tipped the scale for me was reading the manuscript of my friend Marian Schembari’s memoir, A Little Less Broken, in 2023.
By that time, I was venturing out and self-identifying as “neurospicy” online and fully settled into the truth of my autism privately. But I was still taking the tests periodically to convince myself I wasn’t being dramatic (drama being a cardinal sin for this midwestern gal). Marian’s memoir about an autism diagnosis in her 30s reached a part of me that had been afraid to show itself. As different as Marian’s personality is from mine, as distinct as her life experience has been, I found myself in her stories. (It doesn’t hurt that her writing is enviably beautiful. See? I made this conversation about writing!) I devoured her manuscript and cried with joy and recognition — of myself, of a world unlocked, of a room I belonged in.
I’ve never gotten a formal diagnosis, and that’ll always leave me with some imposter syndrome. (As does being asked, “Don’t you think that’s offensive to real autistic people?” when I self-identify to people who see my years of masking as evidence that I couldn’t possibly be autistic.) I did go through the self-diagnosis process from Dr. Angela Kingdon’s book Am I Actually Autistic, which speaks directly to late diagnosis and autism in adults. I’m considering that, finally, definitive, and I’ve stopped taking the online tests for validation.
Stories of formal diagnosis terrify me — it often sounds invalidating and traumatizing. I don’t know if I’d even pass clinical tests mostly designed for young boys. I’ve heard too many stories of women my age seeking a diagnosis and being turned down because they made eye contact and small talk (because we’ve been doing this our entire lives for survival in a world that would not only emotionally reject but physically abuse and degrade us if we didn’t hide and capitulate!). I’m not a student and I work from home in a flexible industry, so I don’t currently have a need for accommodations that require my autism to be certified.
I’m rationalizing this because I feel like I have to — like you won’t take my identity seriously if I don’t explain to you exactly why I haven’t gotten it rubber-stamped by a licensed professional.
But that shouldn’t matter to me.
Identifying as autistic has helped me recognize and celebrate so many parts of myself I’ve always misunderstood. I’m not an introvert or socially anxious or lazy or weird. I’m autistic.
Claiming this identity over the past six years has helped me slowly build a life and an environment that supports the best version of me.
To appreciate the kinds of friendships I develop rather than lament the ones I don’t.
To seize on bursts of attention and energy, and rest when my body calls for it.
To enjoy watching The Office over and over and over and not feel weird about it. (Nor about listening to three distinct podcasts about the show and reading books about it and reading Jenna Fischer’s memoir and cooking Angela Kinsey’s recipes and hanging Pam’s painting on my wall and…)
To delight in an annual Apple Music Replay that shows the world I’ve been listening to almost nothing but the Hamilton soundtrack for five years. (Update for 2026: Nothing but Bad Bunny since the Super Bowl.)
To tell people in my household that cluttered surfaces make me physically ill instead of quietly hoping the tables will clear themselves.
To order takeout instead of sitting on display in a crowded restaurant.
To ask clients about money without shame.
To wear soft pants every day, all year, for the rest of my life.
To bring fidget toys into meetings.
To stretch my body anytime, anywhere.
To avert my eyes when you’re talking so I can hear what you’re saying.
Late diagnosis and self-diagnosis are tricky subjects in autistic medicine, because they’re only recently being considered carefully. Autistic culture, on the other hand, tends to accept them without question, because we recognize people with autistic traits as autistic, full stop.
We don’t need neurotypical-coded checklists to confirm what we innately know about ourselves. I’m so appreciative of the late-diagnosed autistic folks, especially women and queer folks who are underrepresented in the science, who’ve put their stories and experiences out in public to help the rest of us see ourselves more clearly.1
Recognizing my autism in my personality, strengths, desires and behaviors has changed my life. It’s helped me live a life that’s right for me without the shame or striving I suffered for my first 35 years. I don’t need to find a room full of people exactly like me, because I can be myself anywhere I go. I don’t need to choose exactly the right kind of work or the perfect path or the ideal hobbies, because I’ll find my special interest in anything I do — and in that, I’ll find myself.
I no longer need to be understood, because I understand myself.
Your turn!
Have you experienced a late-in-life diagnosis of neurodivergence? What did that explain about your experiences growing up? How has this self-recognition affected your life now?
Some of my faves:
No late diagnosis here, so i'm answering the prompt a little sideways, but the mechanism you describe, getting the right word at 35 and watching it re-file your whole childhood in one go, that part i know. i spent years labeled inconsistent and too much before working out that the label was the broken part, not me. smaller word, same relief!
Hi! Diagnosed with ADHD last year at 34. As someone who struggles to synthesize info without adequate context, I felt like my diagnosis was the missing puzzle piece in my life. It’s helped me accept parts of myself that I had previously fought so hard against. And in accepting myself, I have more grace for everyone around me. In the year after my diagnosis, I bought a house - a huge life goal of mine. I don’t think it’s a coincidence. Thanks for this post - the part about seizing on bursts of energy and attention especially resonated with me!