When Jess Kramer discovered she had autism at age 31 it was a revelation—and she’s not alone. Thousands of women live undiagnosed in a world where male symptoms are the only ones that count
At age 31, I finally met myself—really, truly met myself—for the first time. That may be a weird thing to say, but then again, I’ve always been a weird one.
For years I described myself as “quirky,” a label I gave myself with love. But a year ago, when a good friend asked me if I thought I might have something called Asperger’s syndrome, I was immediately taken aback. Me? No way. I’d seen depictions of autistic people on TV and had met autistic folks in-person (all of them male), and I didn’t think I was like any of them. Just because I made an occasional socially awkward remark didn’t mean my brain was wired differently. I Googled Asperger’s and didn’t relate to the symptoms listed, so I subsequently moved the question to the back of my mind.
After all, as a child, I was a quiet and well-behaved straight-A student, and as an adult I’m doing just fine by traditional standards of success. I’m an NYU graduate with a great job that I love, managing event programming for a diversity and inclusion advocacy organization. I live in a cute Brooklyn apartment that I feel fortunate to call home. Pre-COVID, I was constantly out and about enjoying all the cultural activities N.Y.C. has to offer with a variety of friends.
Basically, I’m a fairly typical New Yorker: politically progressive, well-traveled, food-obsessed, and a little neurotic. I am single, and admittedly find dating exhausting—but doesn’t everyone?
Then, in mid-February of 2020, I went out to a bar with a new friend, and I started asking her about her storytelling experience—she seemed like she might be great for an upcoming event. She’s a lawyer-turned-writer and had been diagnosed as being on the autism spectrum at age 31.
I asked her about her diagnostic process and then worked up the courage to ask the question that had been floating around in my head. If there was anyone to ask, it was her. “A friend once asked me if I thought I had Asperger’s,” I began. “I assumed she was joking, and I was offended. But I have thought about it. What do you think?”
I was expecting her to disregard my statement. Instead, she looked at me seriously and said that the second time we’d hung out together, at a mutual friend’s karaoke birthday party, she’d noticed a few things that made her suspect that I was, in fact, like her. She said she had thought to herself, “She’s spectrum-y, and I like her.”
Whoa. “What made you think that?” I asked.
“Well,” she said carefully, “you were monologuing—talking without give-and-take from others; you didn’t make good eye contact; and your body language was a little off.”
I sat back and tried to digest what she’d said. I wasn’t sure what to think. This person I barely knew had noticed things about me that no one else had ever mentioned. I told her that I had looked up Asperger’s in the past but didn’t really relate to the symptoms. Then she told me something really interesting—that girls on the spectrum, especially those with high IQs, are under-diagnosed, and that their symptoms can be different from boys’. “Well, you made it this far,” she said, smiling. “It may just be something that’s good to know.”
But I couldn’t leave it at that. “I’ve had issues with friends my entire life,” I said, tears coming to my eyes. “It’s been a big pattern.”
As soon as we parted ways, I began my search for more information on “autism spectrum disorder”—the current name of the condition in the Diagnostic and Statistical Manual of Mental Disorders, changed due to Dr. Hans Asperger’s unfortunate support of eugenics. In particular, I looked up what the symptoms were in women.
Reading the results this time was a shock. One by one, I went down the list, and related to almost every one:
- Inability to make eye contact
- Inappropriate facial gestures
- Difficulty starting or continuing a conversation
- Talking excessively about a favorite subject without regarding others
- Inability to read social cues
- Difficulty with emotional responses and reading other’s emotional responses
- Lack of empathy
- Inappropriate social interactions
- Flat speech patterns
- Difficulty adjusting volume of speech when needed (like talking too loudly in a library)
- Performing repetitive movements
- Having rituals and routines that can’t be disrupted
- Becoming fascinated with specific facts and details about a certain subject
- Feeling different or weird as a child without knowing why
- Showing different sides of her personality in different settings as a child, such as being very quiet in public, but very talkative at home and prone to meltdowns when the “mask” is removed
- Strong sense of fairness and justice
- Loyalty
- Inability to lie
- Lack of common sense
- Delayed motor skills
And the biggest one of all for me:
- Difficulty forming and sustaining friendships and relationships. And, though one may want to, never having a best friend.
Some autistic women also experience sensitivity to light, sound, and certain textures—which I don’t—but besides that, all the other symptoms fit to varying degrees. I began to cry tears of recognition as I read down that list. In those signs, I saw me as a child, and me as an adult, more clearly than ever before.
So, how could this be? How could I live to be 31 and not know that I am autistic? How could my parents not know? It seemed impossible.
I did some more reading and found out that the ratio of boys to girls being diagnosed on the autism spectrum is 4:1, but the real number of girls with the condition is probably much higher. Researchers have traditionally studied boys on the spectrum, whose symptoms can be more obvious, such as having public meltdowns and developing increased interest in niche subject matter.
Girls tend to be quieter and adjust to having similar interests with girls their age, albeit with a more unique bent. They are better at camouflaging or masking their symptoms and at imitating other people’s expressions and gestures to fit in. They may force eye contact and prepare language to use in conversation ahead of time.
I proceeded to take a wide variety of online tests, which all came to the same conclusion: I am on the autism spectrum.
My life felt like an episode of The Twilight Zone—I rode a rollercoaster of emotions, ranging from flashes of shock and anger at not knowing about this fundamental part of my identity, to deep despair over a lifetime of being misunderstood and feeling isolated. For weeks I would find myself crying at random moments, running into public restrooms, shaking with tears.
Ultimately, however, I found a huge sense of comfort and relief knowing that, at last, I was coming to a new understanding of myself and discovering that there were, in fact, others like me. Everything in my life that had seemed random and disconnected now made perfect sense.
Everything in my life that had seemed random and disconnected now made perfect sense.
As a child, I was blunt to the point of rudeness. If I received a gift I already owned, I’d say, “I have this already,” and I always corrected my mother’s white lies in public. At home, I was in trouble often and got time-outs without understanding what I had done wrong. “But I didn’t do anything!” I would protest. That would get me more time in my room.
I also craved structure and wanted to anticipate outcomes. I would plan detailed itineraries for slumber parties, inevitably getting upset when things didn’t go exactly according to plan. Rules were meant to be followed, whether they were from board games or ones I made up for my own parties.
School recess was always confusing for me. I had no interest in running around and screaming my head off—I wanted to go to a quiet corner and read. When I did play with others, I wanted to manage the situation. I preferred talking to adults, who found me quite precocious. Similarly, gym class elicited intense anxiety and sometimes paralyzing fear. In elementary school, gym was the only class where I got a B, even though I tried my best. I had little in the way of physical coordination and didn’t mesh well on teams. I much preferred swimming laps solo in my apartment complex pool than playing games with others.
I was in the gifted program in school but didn’t participate in class unless called upon (even though I wouldn’t shut up at home). Basically, I was selectively mute. At the end of eighth grade, I was voted shyest girl—a label that made me furious.
As an adult, I struggled to follow the typical ebb and flow of back-and-forth conversation. Group dynamics were especially challenging. At times, when people asked me thoughtful questions that I didn’t immediately have an answer to, I became frustrated and may have seemed angry as I worked to formulate an appropriate response.
Although my condition went undiagnosed, over time, I learned how to do some things better—as is typical for girls with autism spectrum disorder. For instance, I’ve always related to female outcasts in books and pop culture, favoring TV shows and movies like Daria, Ghost World, and Veronica Mars. But when I discovered Crazy Ex-Girlfriend two years ago, I quickly learned not to bring it up on dates because, once I started, I couldn’t stop talking about it.
Other things, however, had to be pointed out to me as being inappropriate in order for me to even recognize that they needed to change. A former boss, who was an incredible coach and mentor, once told me that I can be too direct, and recommended that I sandwich constructive feedback between compliments. She also said that it seemed like I sometimes missed social cues. That particular phrasing struck me as odd. What social cues? (When I eventually shared my self-diagnosis with her, she smiled and asked, “How do you feel about that?” like she had known all along.)
It’s been great having her in my corner, but generally speaking, friendships and dating have always been challenging for me. I’ve lost friendships time and again throughout my life, usually without ever really understanding why. At times it seemed as if everyone else spoke a language that I could not quite comprehend. To this day, I tend to form relationships based on shared activities and interests, as opposed to sharing deep emotional connections with people. With specific feedback I have improved certain behaviors, but usually, when I lose friends or love interests, the reasons are a mystery to me.
At times it seemed as if everyone else spoke a language that I could not quite comprehend.
For my entire life, I did not have a firm understanding of what autism can actually look like, and the wide variety of ways that it can present in different individuals. I had been working in the diversity and inclusion space for years, yet had not once thought of myself as part of any “diverse” community —aside from the community of womanhood.
These days, I self-identify as autistic without an official diagnosis. Most people in this community overwhelmingly support self-ID, since official autism diagnoses for adults can be difficult and/or expensive to obtain. Our lived experiences are accepted at face value amongst ourselves—after all, autism is not something anyone is claiming to be attention-seeking or trendy. That is not to say that I will not eventually pursue a diagnosis—along with some much-needed therapy—but for now, I am accepted as I am.
Ever since college, I’d been going out almost every night of the week, running from activity to activity. I love going to off-Broadway plays and indie rock concerts and art galleries and comedy shows and readings and all kinds of other interesting places. I always thought I had a severe case of FOMO, never wanting to miss out on anything. But now I think I pursued this lifestyle because I never wanted to be alone with my own thoughts. Maybe I was scared of what I’d find.
Finally, I am beginning to feel something akin to being at peace with myself. I don’t feel compelled to “keep busy” all the time (which is good, since COVID has made this impossible anyway). I don’t feel the urge to drink a little too much just so I can feel more comfortable socially engaging with people. I think I’m finally understanding the beauty of that alone time I was afraid of for so long.
And now that I understand myself better, I can actually begin the work of self-improvement in earnest, forging a path towards the self-acceptance that has eluded me since childhood. I feel lucky that I have the rest of my life to discover who I actually am, and what I can offer the world. I have so much potential—I can’t wait to find out what happens next.
By Jess Kramer
Illustrated by Ran Zheng
This article originally appeared in the Winter 2021 print edition of BUST Magazine. Subscribe today!
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