Changing Focus

I don’t always totally unmask on social media, but when I do, it looks like this.

I have ADHD, which comes with a whole lot of baggage. Most people who grow up with undiagnosed ADHD (I was diagnosed in my late-teens as a college student) have a long history of feeling a bit behind the 8-ball, which frequently manifests in some pretty abusive self-talk. People with ADHD often have issues with time management—or even just understanding time on an intuitive level. To an ADHD brain, time is often relative to task, so we are known to “lose time.”

Additionally, a lot of people with ADHD have varying levels of what is referred to as “Pervasive Demand for Autonomy,”¹ by many members of the neurodivergent community. This is basically a tendency to feel boxed in by demands that conflict with a sense of freewill.² PDA can exist at varying levels and can be situational. And while it’s often discussed as part and parcel with ADHD, as if the basic wiring of an ADHD person is somewhat contrarian, I can certainly see a case for PDA as a reaction to what it means to be a neurodivergent person in a world designed by people with neurotypical brains.

I don’t actually struggle with my ADHD when left to my own devices. I write books and paint rooms and build gardens and install new flooring in my office and love myself and my mind. I’m highly motivated to do the things that make sense to me. I struggle with my ADHD when it comes to bureaucracy, meaningless (to me) social constructs, artificial timelines, and other complex systems designed to accommodate a linear mind (and no one else).

In my twenties, I had a therapist who told me, “The world was not designed by or for you,” and it knocked my socks off. When I repeated this to a friend, she said, “Wow, that’s really harsh,” but to me it felt like relief. All these systems I struggle with are actually a struggle, because they weren’t set up by someone who thinks like I do. It’s hard because it’s hard³ If the world had been set up by neurodivergent people, I think neurotypical people would struggle to make sense of our systems and social structures.⁴ I often joke that neurotypical people just got around to making all the systems faster, since they didn’t have a rotation of eighteen projects going at once. So as a result, we have a ridiculous tax system, the electoral college, DMV forms, standardized tests, and cable installation service window times that span entire afternoons — but if everyone had just waited a little longer for the neurodivergent people to circle back around, we might have ended up with sensical systems. Except it’s not really a joke. It takes a lot more time to work out systems that make sense for everyone. It takes a lot of empathy to consider that not everyone’s brain works like yours. And since neurotypical people generally only have to walk through life acting like themselves, they don’t have a lot of practice in thinking like someone with ADHD. Anyone who believes their worldview to be THE worldview, is not encumbered by doubt and concern, not because they know better, but actually (very possibly) because they don’t know better.

So all of this is to say, that people with ADHD have a lot of experience walking through a world that doesn’t work for them (while trying to pretend it does), and it’s exhausting. Making a demand on someone’s time when the whole entire world is set up for their neurotype is not the same thing as demanding something from someone who is constantly swimming upstream in a world that is not made by or for them. And it makes a whole lot of sense to me that demands feel dangerous (or at the very least, inordinately exhausting) to people with ADHD. But since us ADHDers grew up swimming upstream, we don’t always have a conscious awareness of this added level of difficulty, so we decide that something is wrong with us when we have an aversion to demands. Therefore, on top of all the other ick, the demand has acquired shame. No one likes to do tasks that feel nonsensical, or that run the risk of suddenly becoming nonsensically complex. No one likes to do things that come with a slimy layer of shame.⁵ This avoidance of demands — this desire for autonomy — doesn’t seem like a pathology to me so much as an equation of cause and effect created by living at a high level of overwhelm while bearing the scars of trying to squeeze ourselves into that sharp-edged box neurotypical people slide into easily.

So all of this is to say that even though I understand the equation and the variables and many of the inequalities, I still walk around with the scars of someone who went through grade school as an undiagnosed ADHDer. If I make a to do list, I will have a little panic about the need to check those items off, and the way those items will demand my time, and what that means for my sense of autonomy. A to do list makes me feel claustrophobic. If I make a to do list and see items I dread lingering on that list, I become slimy with shame. The voice in my head morphs into my meanest grade school teachers, and I feel the kind of panic I felt when I was stuck in seventh grade math class in one of those desks with the chair attached SO YOU CANNOT EVEN PUSH YOUR CHAIR BACK A LITTLE AND TRY TO GET COMFORTABLE. And even though I’m 47 years old, and sitting on a couch of my choosing, sandwiched between two snoring dogs, my body reacts like a child with an actual screaming, throbbing lack of autonomy.

TO DO LIST

1. Call the car dealership about the recall

THAT STUPID ATTACHED DESK CHAIR IS HARD MOLDED PLASTIC AND IT’S BRUISING MY TAILBONE AND THE CLOCK IS TOO LOUD AND THE KID NEXT TO ME SMELLS LIKE EGG SALAD AND MY PENCIL POINT IS OBSCURED BY A SPLINTER SO IT SCRAPES ON THE PAPER AND I DIDN’T EVEN KNOW WE HAD HOMEWORK LAST NIGHT HOW DID EVERYONE ELSE KNOW ABOUT THE HOMEWORK!?!?!

Suddenly, I am sweaty-palmed and nauseous. And also, I know when I call the car dealership they’re going to have to call me back, which will require a neurotypical conversation⁶ about unknown details at an unexpected time—which will cut into my creative work time—which will make it hard for me to even get settled into creative work time, because this call may or may not be coming, and it requires me to be a person completely different from who I actually am (whereas, my creative work requires me to be completely and totally and vulnerably myself).

I can imagine that if you are a neurotypical person reading this you’re like, “Oh my god, get over it. Just do the thing.”

And to that, I say, “Kyle, the world is made by and for you, and you never made your math teacher cry in the middle of class because she couldn’t understand why you didn’t understand quadratic equations even after she explained them the exact same way but louder four separate times.”

The whole issue is that it’s not just a mental block, it comes with the primal physical warnings our bodies give us to enact avoidance. That trip to the post office is a rattlesnake on the trail, a mouse in the pantry, a bad guy in the bushes—the way your knees lock up and your face flushes and your heart is telling you turn the fuck around and then also, it’s all coated in a thick layer of hot, slimy shame, because it’s just a quick errand and people do little errands all the damn time and why can’t you? But as human beings, we are not wired to walk face first into pain. So even if you, Kyle, do not understand why a to do list could be painful, maybe you can think about that feeling of pain in a different context, and activate your empathy to layer it into this situation that you have not experienced. Okay, it’s just calling the car dealership or mailing a package for you, but what about that time you got up in front of a whole room of very important and influential investors and forgot what you were going to say, or split your pants, or the chair you sat in made a fart sound and nobody laughed so you couldn’t even joke about it AND YOU WANTED TO RUN OUT OF THE ROOM BUT YOU COULDN’T. How did your body react? Did you get that cringy feeling that sends lightning into your stomach and sharp pains behind your teeth and you wanted to cry or crawl under the table but you couldn’t? That. That feeling and it’s real and no less painful, except it’s about a to do list.

But, Allie, you say, “You’re a novelist who has written five books and a tax-paying citizen who has a drivers license from the DMV and drives a car with a fuel pump replaced by the dealer after the recall.”

Yes. Yes, I am. Because firstly, most ADHDers can white-knuckle that painful shit like nobody’s business. Our whole lives are a navigation of struggle, and with the right burst of dopamine and adrenaline, we have the extraordinary ability to muscle through those excruciating feelings (but then we may be really exhausted and cancel plans, and forget to answer texts for three days)⁷. And secondly, I don’t make to do lists anymore. I make DONE lists.

When my head is swimming and I’m super-stressed and the intersection of me and the neurotypical world feels like it’s hanging over a dark pit of gurgling lava, I don’t write down the things I need to do (I know what they are — all those horrible tasks wedge themselves into my consciousness like foxtails). Instead, I write down what I’ve done.

A different therapist recommended this practice to me years ago, when I complained that I felt like entire days disappeared and I never accomplished anything. And of course, when he told me to do it, I didn’t want to. But later, when I realized that I’d spent three hours researching primary care doctors—which was a real and necessary task that took time from my day—I wanted to give myself credit for that work. So I wrote it down. And then, high on that accomplishment, I sent an e-mail I’d been meaning to send, and I took the garbage out, and I really liked the pen I was using, so I went and cleaned the bathroom and wrote that down too. I made dinner. I took the dog out. I texted with a friend who was having a bad day. I tightened the screws on a saggy cabinet door. And wrote it all down. Some of the things I wrote down were parts of my every day life and I had been oblivious to the time they took. Some of them were foxtail-tasks and I knew they needed to be done, because they’d been stuck in my brain, nagging me. If I’d written those tasks out, I would have felt overwhelmed. I would have beat myself up for not doing them already. I would have felt trapped like a kid in math class. But keeping track of what I’d done was a whole different thing—it was a list of my daily successes. You can’t be trapped by the tasks you’ve already accomplished.

I don’t always make done lists. Sometimes, when I have a deadline, or I’m trying to break ground on a new draft, I need to actively shut off my interaction with the outside world. I have to decide if I’m going to be a writer or a person for that span of time, and push off tasks until later. So I don’t write down that I walked the dogs, even though I always do, because I don’t want to get hooked on the high of tiny accomplishments when I have larger, slower, vital work to do. But when I’m trying to put my life back together after a long streak of being a writer instead of a person, I write down every little task I complete, and it encourages me to do one more thing, and maybe one more after that.

Sometimes, I keep a list of reminders next to it—things I could add to my done list, if I did them.

“But isn’t that a to do list, Allie?”

NO IT IS NOT A TO DO LIST! DO NOT CALL IT THAT OKAY? IT IS JUST A LIST OF THINGS THAT COULD BE DONE IF I DID THEM AND WON’T BE DONE IF I DON’T DO THEM AND LOOKING AT THEM DOESN’T MAKE ME FEEL LIKE MATH CLASS BECAUSE THEY ARE NOT DEMANDS JUST SUGGESTIONS AND I HAVE AUTONOMY OVER MY OWN SELF OKAY?

Okay.

I’m sharing all of this in case you understand and the idea of a done list might feel good in your bones, or in case it helps you understand someone you love. It’s okay if you don’t get it. I don’t understand how Kyle’s brain works. We’re not the same, me and Kyle.⁸ I hear he does his taxes early for fun, then folds the laundry he didn’t forget to move to the dryer and checks those things off his to do list without a second thought.

1. There’s another name for this behavior pattern with the same initials, but it’s unnecessarily offensive and seems to stem from neurotypical frustration with ADHD traits vs. an understanding of ADHD struggles at the intersections of the neurotypical world.

2. Please note that I am not a professional, just a person with ADHD and this is simply my understanding of ADHD and PDA

3. I am always relieved by this idea.

4. Recently I read a great piece about neurotypical/neurodivergent communication that came to the conclusion that while neurodivergent people are often faulted for communication issues, we don’t typically have an issue communicating amongst ourselves — the communication issue is at the fault-line of neurotypical/neurodivergent people, because neurotypical people struggle equally to communicate with someone outside their own neurotype.

5. Unless that’s your kink, and I’m not here to judges, but I’m not talking about fun shame, recreational shame, I’m talking about the dread-of-opening-that-pile-of-mail shame.

6. Because even if the person on the other end of the phone is also neurodivergent, we will both feel the need to speak the national language, which is neurotypical

7. When you see ADHD people getting shit done, you’re probably not seeing the toll it takes unless they really really trust you. We pay that toll in secret.

8. Which is totally fine as long as I don’t end up trapped in an elevator with him and am suddenly expected to make small talk about crypto or golf shoes or oilseed futures or whatever it is people like Kyle talk about.