18. Horseshoes and Hoofbeats

Round 69 of overanalyzing let's go

Welcome to CHAPTER EIGHTEEN of #TechnicallyAutistic: Lessons from the Periphery, where I take a deep dive into different theories of autism.

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One of my closest friends, Angie*, told me she’s in the process of getting diagnosed with autism.

Even when I was practically housebound, our friendship remained strong. We’d sit down and talk, or even just text for hours. We talked about many different things, mostly, people stuff: family woes, Karens at work, and countless embarrassing moments that would end us if anyone else found out, but somehow felt less embarrassing when we told each other about it. Sometimes we had different opinions, but these disagreements never felt like fights. They were just as benign as another pair of friends debating over who the hottest person in The Bachelor is.

On social media, it’s hard to see the nuanced reality of autism. You can (and should!) Listen to Autistic Voices, but it’s still Zuck’s world, and you’re going to see a whole lot of emotionally charged, hyperbolic statements and sensational stories, because clickbait sells, baby. Unplugging and spending time with diverse people has reminded me time and again that we’re all human, and that the cutoff line between “autistic” and “allistic” (non-autistic), is so insignificant in the grand scheme of things. Just as it wouldn’t matter if Angie is autistic and I’m not, it wouldn’t matter if I were autistic and my other friends were not.

And sometimes, I wonder: if you took my labored speech, my jumbled reactions, and my awkward pauses—put it aside, even just for a second—and focused only on my internal thought processes, would there still be something different about me that mark me as autistic?

I used to be so sure of my answer—that I was non-autistic on the inside; I was just another girl with ADHD, but with the severity cranked up to the max and some extra motor issues—but now I’m not sure anymore.

I’ve always said that my lived reality aligns more closely with being allistic than autistic, but this feeling of alignment may have less to do with the general cutoff line between “not autistic” and “autistic”, and more to do with how the world applies that concept to me specifically.

I know that autism, in its most subtle forms, are indistinguishable from personality traits and only becomes disabling when the person is under extreme mental or physical stress. I’m definitely eccentric, and it’s entirely possible that I’m one of those people with latent autism who could still benefit from additional accommodations to optimize their well-being.

It’s hard to say, because my outward presentation skews the metaphorical algorithm. Let me explain:

A common exercise recommended for adults struggling to accept their autism diagnosis is to “try on” accommodations used by other people with the diagnosis. Often, this leads to a revelation: “Oh my goodness, I feel so much better! I can’t believe I was living life on Hard Mode all this time.” So if I’m wondering whether autism affects my social life, I might start by telling (not ignorant) people, “Hey, I’m autistic, and I find it helpful when people are very direct with me and let me be direct,” even if those words feel foreign to me, and see what happens.

When I say these things, I’m basically giving people an algorithm: I’m highlighting a pattern and drawing attention to anything that fits that pattern. This is where things can get very confusing. For example, my unreliable tone or impulsive remarks (nothing mean, but just awkward) could easily be taken as an instance of me being unaware of subtext. So can my struggle to “get to the point” while talking or providing sparse details during social conversations. The algorithm will EAT this up, distorting people’s perception of like, how direct are talking here?

When I tell people that I identify with certain autistic traits, what I say has entirely different implications than if someone like Casey* or Angie were to say the same things. Even if I look at my life and recognize enough Autism Moments—and that is a real possibility—having that understanding reflected back to me feels like a futile endeavor.

The idea of being allistic “on the inside” might raise some eyebrows, but it was something that occurred to me as I educated myself more on autism. Like I said, my thought process was: So you’re saying that not everyone who is autistic acts A Certain Way, because autism isn’t about how the world sees you; it’s about how you see the world. But wouldn’t that mean that the opposite is also true? That not everyone who acts A Certain Way is autistic?

According to queer autistic scholar Nick Walker, there is a deeper, third layer beneath it all that I haven’t touched on yet. On her blog post, WHAT IS AUTISM? , she writes:

The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

So much of the current conversations on autism challenges the view that autism is a social DEFICIT and not the view that autism is a SOCIAL deficit. But Walker says it makes more sense to see social differences as a “by-product,” rather than the defining feature, of autism:

An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development.

What Walker said about autistic people registering more information lines up with the descriptions of “bottom-up” thinking, where your brain recognize the smallest details first and work its way up to the bigger picture, spending more effort on filtering out irrelevant information. Now that I think about it, all the examples of bottoms-up thinking that I couldn’t relate to only talked about the social- aspect. Social cues. Social dynamics. Social rules.

And, as you might expect, the focus was always on interpretation, with no mention of how it could impact communication independently of that: Struggling to “read the room” because you can’t keep tabs on everyone’s facial expressions? Nope. Having to translate common turns of phrases (“Like it’s getting late” to mean “Let’s end the conversation, time for closing remarks”) in my head? Can’t relate. Unable to assume things about other people? I wish.

Clearly, I don’t process incoming information in a bottoms-up way. But I can recognize some elements of bottoms-up thinking in how I notice and describe things that happen inside my head:

Although I can quickly guess what someone probably means when they say something, I take longer to clarify what I mean. When I say the same things over and over, each rephrase is better than the last, and when I write, I usually have to cut down my first draft by at least a half. If I get in a fight with someone, I usually go through at least five rounds of internal debates to be able to summarize my position—“I don’t take an issue with A, but I have an issue with B, because reasons D, E, F but mostly E.” Doesn’t that mean that my brain is manually sifting through each piece of information (bottoms-up thinking), instead of skimming (top-down thinking)?

And though I can usually read body language at a glance, my body language might be harder for other people to read. My body isn’t the best at handling two things at once, like looking straight ahead while looking for words, or eating while facing a person. I also wear special glasses (prism lenses) so that my left eye and right eye can look at the same direction, and if I wear regular glasses, I can’t make eye contact at all (if you want to know what this feels like, try holding your hand up perpendicular between your eyes). Doesn’t that mean my brain is processing sensory input in separate parts (bottom-up thinking), when other people might experience it as a unified whole (top-down thinking)?

“I believe that the best way to understand autistic minds is in terms of a thinking style which tends to concentrate resources in a few interests and concerns at any time, rather than distributing them widely,” writes Fergus Murray, an autistic educator from the UK, on his website, monotropism.org.

There, Murray explains monotropism—an idea developed by his mother, psychologist Dinah Murray—which he claims “explain[s] many features of autistic experience that may initially seem puzzling, and shows how they are connected.”

The theory of monotropism suggests that allistic (non-autistic) people are polytropic, meaning they focus on many things at once, while autistic people are monotropic, operating from an “attention tunnel” where they focus on one thing at a time.

It’s easy to see how a monotropic brain would favor bottom-up thinking, where you carefully examine one thing at a time to form a conclusion, rather than looking left and right for context clues. But if I’m understanding this correctly, a person could use tops-down thinking in any given situation—so maybe, they “read between the lines” more than “hang onto every word” in their conversations with people—and still be monotropic if they aren’t attending to other things going on in their life.

When I get tired, I automatically turn off the methodical part of my brain, before I turn off the social part. If you catch me when I’m cooked, you might hear me chuckle "Quite a mouthful, isn't it?" and start a side conversation while someone is still writing down the name of a band I spelled out for them, or rush to open a door for someone as a friendly gesture only to stand right in their way. This doesn’t mean that the expectation to be “social” is maiming me (unlike what sensationalized stories about “masking” might suggest); everyone has different strengths and weaknesses. If someone like me could be considered autistic, then perhaps the next frontier in autism advocacy is to hold space for different ways people may channel their attention tunnel, and eliminate the idea that one way is more authentic than another.

Cognitive resourcing is a fascinating thing. Ever since I could remember, I’ve struggled to understand the motives of characters in books and movies, which puzzled me because I was good at symbolism, historical context, and things like that. Then, one day in my senior year of high school, after I got a poor grade on an essay, I went to my teacher for help. She started talking about all these location changes and legal and financial proceedings that I didn’t even realize had happened. It turns out, I’d been accurately identifying the emotional state of the characters, but completely misunderstanding the sequence of events that led up to it.

A few weeks later, the school made me take an IQ test so that I had an up-to-date documentation that I could use to apply for accommodations for college. In the final report, my evaluator concluded that my comprehension issues was a reflection of my ability to remember words, than my ability to infer meaning:

Because learning often involves a combination of routine information processing (such as reading) and complex information processing (such as reasoning), a weakness in the speed of processing routine information may make the task of comprehending novel information more time-consuming and difficult for Asaka. Thus, this weakness in simple visual scanning and tracking may leave her less time and mental energy for the complex task of understanding new material.

With all that being said, I was still experiencing this as a comprehension issue, and not a visual one. When I was reading books, I wasn’t thinking, Ugh, not me skipping a line again or What does that word mean again? Instead, I was making wild guesses about the story itself and then taking a nap because I was so damn exhausted. Disability or not, so much of what happens in our brains is outside of our conscious awareness. Knowing “why” can be helpful in one context, but in other contexts, it might be completely irrelevant.

The human species is unique in our tendency to seek meaning in everything. It shouldn’t be surprising that two individuals with the same functional disabilities may make sense of their circumstances differently, resulting in widely varied subjective experiences. People with hearing conditions have grappled with this, too, and they’ve adapted their vocabulary to address it.

If you started to notice more people spelling “deaf” as “d/Deaf” that’s why. “Deaf” with a lowercase “d” refers to a physical state of not hearing, while “Deaf” with an uppercase “D” refers to a cultural identity shared by people who do not hear. In the United States, Deaf people use American Sign Language and observe distinct social norms, which includes prolonged eye contact, a blunt manner of speaking (signing), an emphasis on physical touch, and lengthy goodbyes (at gatherigs, people may linger for an HOUR after saying that they are leaving. Sign me up—no pun intended!). In the book, Deaf in America: Voices from a Culture, Carol Padden and Tom Humpheries write:

The members of this group have inherited their sign language, use it as a primary means of communication among themselves, and hold a set of beliefs about themselves and their connection to the larger society.  We distinguish them from, for example, those who find themselves losing their hearing because of illness, trauma or age; although these people share the condition of not hearing, they do not have access to the knowledge, beliefs, and practices that make up the culture of Deaf people.

When I think of it this way, I could be autistic (or have autism, I wouldn’t care) with a lowercase “a,” just not Autistic with an uppercase “A.” I might have the mental condition, but not necessarily the social identity associated with it. And this isn’t even an analogy; many people on social media have already began to capitalize "Autistic.”

I might have leaned “Autistic” with a capital “A” when I was younger, but that’s far from the most important thing people should know about me. Fun fact: did you know that English is my “second language,” strictly by definition? I do have an accent, but English comes more naturally to me. Not only do I read, write, and talk in English, I think in English. It’s a big part of how I define myself. It would be kind of weird for my friends to go around telling people, “This is Asaka, English is her second language.”

I could very well be autistic. But a lot of what I’m describing also sounds like ADHD. So what gives?

Murray posits that people with just ADHD also exhibit some forms of monotropic thinking, though more research is needed. A key sign of autism is focusing on details that others may consider unimportant or irrelevant, while a key sign of ADHD is inattention to detail; many people with both diagnosis report that treating their ADHD have made their autistic traits more prominent. In fact, most newly diagnosed autistic adults I know had been previously diagnosed with ADHD and chose to seek further evaluation when because they were still having problems at work, home, and with friends.

My experience has been the opposite.

When I tried to fight my autism diagnosis as a freshman in high school, I argued that my social struggles came from executive functioning issues, as opposed to a specific thinking pattern that would indicate autism—an explanation often met with skepticism since I guess my behavior seemed too bizarre for someone with just ADHD.

(Also, I’ve come to realize that most people don’t want to analyze how many different parts of our brains are engaging when we’re socialize, because it’s unsexy. We’d rather to believe that charisma can be solely attributable to pure intentions if not a basic understanding of social cues, instead of things like quick recall, efficent coordination, and store-brought norepinephrine.)

And even if my disorganization, forgetfulness and impulsivity explained the awkward pauses in conversations, it didn’t explain my unusual relationship with writing.

I was always thinking about writing. Every five minutes, a new phrase, analogy, or inkling would come to me, even when I was doing something completely unrelated. I’d pull out my phone in the middle of the grocery shopping to jot something down in my Notes app. Every couple of weeks, I'd transfer these notes to a Google Doc, where I’d crash my mental GPS with all the scrolling, copying, and pasting, since I was working with incomplete if not redundant sentences. It was a painstaking process—once, I counted and it took me a whooping 200 hours to finish writing a 3,000 word blog post. Most of my rambling never made it to second draft, but when I miraculously made it to the third draft, I was tormented by the fear that I would die before the piece was published. I hated working from backlogs, and never feeling present. I wanted to stop writing. But I couldn’t.

I didn’t have an identity outside writing. Oh, and I also wrote a lot about a niche topic: disability. Every time I met someone new, I pressured them into following my blog, but many of these friendships dissolved because they couldn’t relate to me. I couldn’t comment on topics like classes and Netflix shows, and I couldn’t recall things like what I ate or what the weather has been like (though not necessarily because I was engrossed in writing; I felt slow and forgetful in general). In hindsight, I also think people walked on eggshells around me because I sounded very intense on texts and emails, and would go on unhinged rants on social media.

Being medicated for ADHD has radically changed my relationship with writing. I have a much easier time fulfilling social and emotional needs that I used to rely entirely on writing to meet. Without the constant brain fog, my conversational abilities are up to par with my extroverted personality, and that’s all I ever wanted, to talk to people.

I’ve mostly been able to kick my text-bombing habit, instead using a combination of in-person, phone, and voice memos to maintain an open line of communication with friends while giving myself space to gather my thoughts. Healthy friendships is kind of like co-authoring an article, where both people work together to create a balanced story without one person controlling the narrative, and it’s easier to achieve that balance when I can organize my thoughts.

The process of writing itself is more efficient—who knew I could type one sentence from beginning to end in one go?—so I get more satisfaction out of it. I have more time to learn new hobbies. And I’m a pretty fast learner now. For the first time, I can listen to NPR while my dad drives me, and I’ve been doing write-ups for a podcast, The Jounalism Salute, where I’ve learned so many interesting historical and scientific facts.

Becoming more well-rounded didn’t dull my personality; it just means that I have more to joke or wax poetic about. I feel more passionate about what I write. Today, my life experiences dictates my writing, whereas before, my writing has dictated my life experiences, restricting who I talk to, where I go, and how I spend my time, because my portfolio was the only thing I could control.

I always balked at people’s insistence that writing was my special interest, though I couldn’t argue against it. I had a much easier time concentrating on writing than I could concentrating on anything else. “Write about it” was my go-to solution to every problem I had, and I brought my verbose, highfalutin “voice” to settings where it wasn’t socially acceptable. As far as special interests went, it checked off all the boxes. But I wasn’t just interested in writing; I’d been using it as a practical means to cope, pushing myself to my limits through sheer force of will and desperation.

Don’t get me wrong; I have nothing but love for my past self, my past work, and all the people who helped me keep a positive outlook. As people, we crave more, but I think that’s a dangerous game. I can recall many moments where I was truly happy. I burnt out afterwards, but that doesn’t make these moments of joy any less real. I had people in my corner who did everything they could to support me.

At the end of the day, I’m thankful. That chapter of my life has taught me so many valuable lessons and I’m excited that I have the tools to apply them in practice. It just unnerves me to think that I may have never gotten the help I needed, if I wasn’t incidentally prescribed ADHD medication after nearly failing my classes. That’s all.

Sometimes when you hear hoofbeats, it really is a zebra.

Here I go again, overanalyzing. I will touch grass, and I’ll do it as soon as I finish my next chapter. But bear with me for a little longer, please?

Have you heard of the horseshoe theory? It's an idea in politics that suggests the far-left and far-right are quite similar, even though they seem opposite. Many people have pointed out that this model doesn’t capture the most pressing problems facing our country, and I agree. But still, this idea that if you take anything too far in one direction, you could end up with the same problem you started with, has many uses beyond politics. Like different definitions of autism. 

You can define autism in technical terms, on observable behavior: autism is when you display these specific observable behaviors, no ifs ands or buts. Or, like Walker and Murray, you can also define autism as theoretical terms, as a set of tendencies that makes someone more likely to react to things certain way but not always. 

These definitions seem diametrically opposed, but if you really think about it, they enforce the same approach: that autism is something that you can see, whether that’s through direct observation or brain activity.

I can’t speak on the scientific utility of this. But I don’t think these models should be used to discredit a person’s subjective, lived experiences or deny their autonomy. Each of our brain is as unique as our fingerprint, and as we embark on this adventure called life, our neural pathways make new connections. I don’t study psychology, but I know that much. People don’t come in factory settings, and every one of us have unique observations only we can make. In that sense, we really are the best experts of ourselves.

Society operates under the assumption that anyone who fits the technical definition of autism should also fit the theoretical one. Right now, we have a fertile ground for different stories about how autistic people: Autistic people think this way… Autistic people love it when you... Autistic people hate it when you… Many people, including myself, rely on diagnostic tools to reveal a singular, deeper truth about a person, and forget that their stated purpose is to record statistically significant cluster of symptoms or traits.

Our experiences shape our perceptions. Just as my outward presentation might make it difficult to get a blank, clean sounding board for how certain accommodations work for me, my personal experiences with stigma influence what language I’m comfortable with.

Autism shapes how a person perceives the world. You can also say the same thing about intellectual disabilities and Down Syndrome. Yet, language preferences vary: many people on the autism spectrum use identity-first language (“autistic”), while most people with down syndrome and intellectual disabilities prefer person-first language (i.e. “person with intellectual disabilities” or “person who has Down Syndrome”).

What I’m seeing here is people trying to push back against the status quo. Autism can sometimes (not always) be invisible, and it’s common for an autistic person to feel like their struggles are not taken seriously. In comparison, other disabilities are more visible, and it might be more common for people with these disabilities to feel like they are being defined solely by their challenges.

I’ve read so many good stories about people with different disabilities succeeding despite people doubting them. It’s no secret that the education system fails children with disabilities (and teachers, who are overworked and under-equipped), and there are also common patterns based on different diagnoses. For example, teachers might take out their frustration on autistic students for not following instructions despite being given multiple “chances,” when what they need is for someone to explain in a different way or to ask more clarifying questions. Meanwhile, students with intellectual disabilities might be cast aside, forced to do simple, repetitive tasks because the current assignments seem too challenging, when what they really need is just more time.

Due to the unique societal barriers faced by each group, autism advocacy tends place a greater emphasis on how autistic people are different from non-autistic people, while intellectual disabilities advocacy focuses more on how people with intellectual disabilities are similar to those without intellectual disabilities.

I say all this because I wonder if my aversion to certain autism cliches—the glittery generalities about “seeing the world differently”, the constant contrasting between autistic vs non-autistic communication styles, and the whole “masking” thing (and seeing so many gorgeous girls selling their entire platform on how she’s NOT as “typical” as she seem)—has more to do with my own projections, than the intended message.

So much of the messaging that I see on social media is made for and by people whose deepest wounds stem from sentiments like “But you’re so normal. Stop using it as an excuse and get it together already!” They might not necessarily be thinking about the people whose deepest wounds came from sentiments like “Oh, you’re special… I’lll assume what you need.” I’m not saying that one stigma is “worse” than another, and I should also note that the same person can be be hurt by both of these things (I feel like lately, I’ve been getting more of the former).

What I’m suggesting is that some of these messaging, drawing attention to how different autistic folks are, only help when there’s a backstop: you’re different, but to an extent. There’s definitely a place for it. But I want you to know that as someone who can present as overtly “strange,” I don’t have that backstop. Some of the rhetoric that I see on social media feels like a free pass for everyone to treat me like an alien species, deciding that something is too hard for me, and exclude me from conversation assuming that I won’t be interested in the same things they are.

Keyboard warriors like to poo-poo assimilationism as a “privileged” stance, but it’s not that simple.

The right to fit in is something that so many people take for granted, yet remains out of reach for some disabled people. For instance, when a person with Down syndrome expresses interest in "adult" activities like drinking, swearing, or getting frisky, the people around them might falsely assume they’ve been groomed, unable to consider that maybe, they did it because they felt like it.

The right to try, too. An AAC (Augmentative and Alternative Communication, which includes picture boards, communication books, and computer-based systems that help people talk) user might face skepticism about whether their words are “real,” especially if they have an aide with them. This can be dangerous if they’re being abused and the people around them aren’t believing them.

And then there’s this mentality that disabled people and non-disabled people are so fundamentally and intrinsically different that they should be separated, to “be with their own kind.” Strides in disability rights have been achieved despite this idea.

In the disability community (and in many other communities), we have all these people who have been fucked over by the system in so many different ways, trying to reclaim their power in so many different ways. As human beings, we want what we have been denied. We heal our inner children, and negotiate with the world every day, trying gauge what the people around us do or don’t know about our lives so that we can engage in meaningful dialogue.

I’ve always said that my lived reality aligns more closely with being allistic than autistic, but maybe this feeling of alignment may have less to do with the general cutoff line between “not autistic” and “autistic”, and more to do with how the world applies these concept to me. If I’m being honest, I don’t know what my “true” place is on the spectrum.

And I can sit with that uncertainty.

It feels like I'm on a Ferris wheel that stopped, where, as the motion steadies and the butterflies settle, I see the vibrant hues that lie beneath. If I’m the last to find my footing, so be it. I’ll watch the sun go down, admiring how small yet mighty we all are.

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