In Which I Learn - At Age 40 - That I'm Autistic

"Nathan for You" becomes "Nathan for Me!"

Dave and I have been enjoying season two of the astonishing and hilarious Nathan Fielder project, “The Rehearsal.” On Monday, I happened upon an article about the most recent episode, and I skimmed it briefly.

It seemed that Fielder, whose signature flat affect and social awkwardness are a central part of the comedy in any show he makes, discovered that, since the first season of "The Rehearsal” was so beloved by the autistic community, perhaps he could add a valuable serious element to his image—crucial to this season's ultimate goal of using a somewhat silly role-playing exercise with pilots before flights, in order to empower them to speak up to each other when dangerous conditions strike—by partnering with an autism advocacy group.

When he shows up, he meets Doreen Granpeesheh, founder of Center for Autism. She's clearly under the impression that Fielder’s interest stems from the fact that he is autistic himself. And I think she's right about the autism part—but incredibly, it’s news to Fielder … or at least, he plays it that way. Pioneering meta-modernist that he is, we can't quite know for sure.

By the way, remember to catch the season finale on Monday, and stream the entire series on the HBO app that is, for the moment, still called Max.

So Ms. Granpeesheh shows him one of the diagnostic tests for autism: the Reading the Mind in the Eyes test, in which a set of eyes are shown, and the patient is asked to identify the emotion they show. He whiffs the first question—and then the second.

Reading about this, it occurred to me that actually, I find it incredibly difficult to discern the emotions that eyes are supposed to convey.

I looked up from my phone and exclaimed to David, exasperated, “You need the rest of the face, right? The mouth, if you want to know what emotion the person has. Or hear what they actually say!”

Neither of us had spoken aloud for at least 15 minutes. Dave had no clue what I’d been reading or was now talking about. Slightly startled by my outburst, he turned to me quizzically before politely agreeing and going back to what he was writing.

Well, I'm just going to take that test myself, I thought. We'll see how well I do.

Precisely 16 increasingly agonizing minutes later, I had my score: 13/30. Somehow, a few of the guesses I'd ventured for every single one of the 30 questions were right. I'd gotten 43% right. In other words, I’d flunked.

And since I'd flunked, the site suggested I might like to take the much longer test that had been used to diagnose Asperger Syndrome before the spectrum-based understanding of autism took its place. My stomach fluttered. OK, I thought. I'll do it.

This test, unlike the first, was easy. But taking it was an unsettling experience. It felt like the test makers had sent cameramen to secretly follow me - for years.

“What?! How do they know that?!" I'd shriek periodically, causing Dave to turn to me a number of times with furrowed brows while I was being interrogated:

• "Do you prefer to do things on your own even if you could use others' help or expertise?” Well, it's not my best trait, but yes. The last thing I want is someone “helping” me when they’re all but guaranteed not to understand where my confusion lies. Whatever “it" is, I get it eventually on my own.

• “Do you have problems finding your way to new places?” Oh, my word: Yes. I cannot get to a place I've never been before on the first try. Not even with GPS.

• “Do you dislike when people you love walk behind you?” Now, really: How could they know that?

• “Do you get confused by several verbal instructions at the same time?” Yes! I can listen closely and say, "OK, great! Thanks,” but I'll still mess up Step #2 every time.

• “Is it hard for you to see why some things upset people so much?" I teared up at this one. I’ve always felt so … well, defective because of this.

• “Do you instinctively get frightened by the sound of a motorcycle?” What?! But … yes, actually, I do. And I assure you, I have precisely zero motorcycle-related traumas in my past.

• “Do you instinctively notice the tiny patterns all around you, like the little star that appears inside an apple when you cut it?* I could lose an entire day to the tiny patterns I notice. And I have!

• “Do you have an avid perseverance in gathering and/or cataloguing information on a topic of interest?" I hope, for your sake, that you are never exposed to the Notes app on my phone. You would be horrified by how much "information of interest” is “catalogued” there.

“Oh, my God!” I shouted melodramatically when it asked if I'd adopted an extreme diet. I'd become a vegetarian at age two, only occasionally being persuaded to eat chicken when my mother demanded politeness in a social situations. I'd shoot her baleful little looks when she turned away and spit the revolting animal flesh into a napkin.

But then I came to a baffling question: “Do you have obsessive attachments to animate objects?"

I thought immediately of my favorite coffee mug. I had become legitimately distressed a couple of days ago, when Dave decided it needed to be washed and I couldn't use it that day. It looked fine to me! And what business was it of his?! But then I peered at the question again: "Animate objects?”

“What do you think ‘animate objects’ would be?” I asked Dave. “Are they, like, robots? Or maybe … appliances that move? Is it just anything automated? Or do they mean, like, Cogsworth and Lumiere in ‘Beauty and the Beast?’ I do quite like them, when I happen to think of them, but I'm not sure I'd call it an ‘obsessive attachment …’" I sighed in frustration. “There’s - there's just not enough information here! They made this test wrong! Oooh: Do you think it's a typo, and they meant to write ‘inanimate objects?"

“I think whatever test you're taking, you qualify," he deadpanned, before allowing the corner of his mouth to twitch into a smile.

But the coffee mug. And my books. And my special soup mug. That one perfect, prized gel pen from a pack of five other lackluster ones. And, and, and: I clicked “yes."

On and on it went. My final score? 167/200, which indicated - and I kid you not - "100% probability of autism.”

I stared, blinking as my heart jumped. This was a credible, academic site. This was a credible, academic test, even if the condition it tested for was called something else now.

Flustered, I opened my psychiatrist's website and dropped the link into a direct message: “Just scored 167/200 on this. Flunked Reading Mind in Eyes 13/30. Have booked appt for Wed - would like URGENTLY to talk about result.” I exhaled, sweat dotting my brown, my breath a little ragged.

“David," I said to my fiancé. He turned to me from his writing station at the old kitchen table he uses as a desk. “This thing is saying I’m autistic."

His eyebrows arched. "Wow! Well, that makes sense,” he said, smiling encouragingly before turning back to his writing, leaving me gaping in dismay.

For the next couple of days, we said isn't it funny that I've always been able to see music, that numbers and words have colors and tastes. And isn't it funny how I freak out when my stuff is touched or rifled through: When he opens my packages, to spare my messed-up arm, I feel invaded, spied upon.

And isn't it funny that I've always had trouble making eye contact - found it physically painful? And isn't it funny that, from my school days to my adventures in the land of cubicles to now, with our publishing company and Substacks, I consistently find simple instructions to be completely unclear, despite being pretty smart?

There were just so many things, as I explained to my doctor on Wednesday. I can't use Twitter (or Substack Notes) because I don't see why I should want to talk to anyone online whom I don't already know. I am utterly incapable of networking: I watch Dave do it so easily, and I feel like an exchange student again, studying another culture from a safe remove, knowing I won't be expected to participate.

When someone gives me a wordy verbal response to a question, I have difficulty understanding what the actual answer is. I'm willing to stray out of my comfort zone when it's my choice, but if circumstances - or someone else - make it so that I won't be doing what I expected to do, I seriously need five to ten minutes to calm down and recalibrate.

• It is impossible for me to understand the rules of any card game. I just cannot do it.

• I've almost always felt as if I'm the star of a very long and meandering movie about this random woman named Sally, instead of living my life with intent.

• I have always felt deeply and seriously misunderstood, though my inborn Midwestern practicality - incidentally, the only practicality I possess - meant I never saw any sense in dwelling on it.

So yes, my doctor agreed: I was autistic. But interestingly, two common “symptoms” do not fit, we discovered. They were the areas of the test where my score was lowest: talking at length about niche interests and feeling comfortable in romantic relationships.

I know that I don't habitually corner people and make them listen to an impromptu TED talk. However, I do tend to go on a bit about fashion, history, fashion history, and etymology when I know I'm with someone who will find it at least mildly interesting. I'm such a people-pleaser, though, that I probably learned pretty early not to do this: I spent my childhood earning a precocious PhD in “Keeping Dad from Getting Angry." Like a kind of tuba-playing, book-writing Hulk, we did not like him when he was angry. Peppering him with annoying facts or a droning narrative on a subject he didn't care about would have been too risky, and I probably stifled the urge.

And because of other early trauma, I was in serious need of someone besides my mother who would always be there for me; who would never hurt me. This made finding a good, healthy romantic relationship a top priority for me from my teen years, and I had a lot of false starts. Still, I always bless the broken road that led me to where I am today: My fiancé, David, was worth waiting for.

So! With my diagnosis, I was referred to groups, recommended books, and generally pointed in the right direction, though I already knew where to go (and where not to go):

What's ironic is that I have been aware of and interested in autism for almost twenty years (though evidently not aware enough to understand that I should get myself checked out), ever since college, when I regularly babysat the sweetest nonverbal autistic boy and his two neurotypical siblings. In the years after our time together, he inspired me to advocate against the “delightfully quirky” image autism currently enjoys. This framing, I feel, erases more serious cases.

"We're not all Manic Pixie Dream Girls,” I said crossly to Dave. And it's true: Autism can mean you're a functional person with some eccentricities. Or it can mean you need to live in a care facility for nearly your entire life.

“Yeah, but you are,"Dave said immediately. I cringed as he assured me he meant it in the best possible way. Am I just a plus-size Zooey Deschanel? I do have to admit I could see what he meant: I'm eccentric, silly, witty, pretty, spontaneous, willing to discard social norms … and actually, kind of a train wreck, though I've always hoped to live a colorful life full of amusing and enlightening misadventures, and I'm pleased to say that I’ve succeeded in that so far.

It's fashionable right now to call autism a “gift” rather than a handicap, and even at this early stage, I can see why: Pattern-recognition superpowers make me a great editor. Being able to see music and taste words is mostly a joy. I'm truly in love with learning and cataloguing information. And the metaphysical disposition many autistic people incline to has shaped my life in amazing ways (though that story is for another day).

But parents of children whose autism comes with intellectual disability, an inability to meaningfully receive or communicate specific information, and/or severe mobility and coordination issues are struggling. Tell these parents that autism is a gift, and they'll tell you that God better have kept the receipt.

For now, I'm honestly a little overwhelmed. But I hope that, as time goes on and I learn more about how to work with my brain, instead of against it, to continue to build the life I want to live, I'll be able to pivot towards advocacy for parents whose children are most severely affected. Those parents are drowning, and they need visibility and help.

Well, now you're up to date on what my week has been like! Now I'm off to go work on the family tree of Queen Victoria that I keep in my Notes app. After that, I may even challenge myself to list all the countries of the world in alphabetical order, as I often do to relax and wind down.

Yup, it's official: I'm weird. I'm proud of being weird! And now I know why.

Thanks, Nathan Fielder.

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