Epilogue
Welcome to the EPILOGUE of #TechnicallyAutistic: Lessons from the Periphery, a digital memoir about words, meanings, and feeling like an outsider amongst outsiders.
If I grew up in the 1960s, I would’ve been diagnosed with something called Minimal Brain Dysfunction, which is “characterized by evidences of immaturity involving control of activity, emotions, and behavior, and by specific learning disabilities involving the communicating skills needed in reading, writing, and mathematics”1
And if I went to Scandinavia, doctors might tell me that I have DAMP. And no, it’s not a joke. According to Wikipedia2:
DAMP (deficits in attention, motor control, and perception) is a psychiatric concept conceived by Christopher Gillberg defined by the presence of five properties: problems of attention, gross and fine motor skills, perceptual deficits, and speech-language impairments. While routinely diagnosed in Scandinavian countries, the diagnosis has been rejected in the rest of the world.
Diagnostic categories change over time. These labels are limited tools, not the end-all-be-all of understanding ourselves and one another. I don’t belong under labels; labels belong under me.
There was a time where it felt like my symptoms dominated every social interaction I had, leaving me in a hurry to either secure the “right” diagnoses or defend its absence. I didn’t want to be the who’s gonna tell her? girl. But with the right support, coping strategies and psychiatric care, I’ve been able to take control and buy myself time before having to have these conversations. And my mom said that if I get what I need, it’s all that matters.
Sometimes, I need help, and I need to succinctly communicate what is going on. The jury’s out on whether I’m autistic, but I like to use more specific labels that addresses the most relevant aspect of my disability.
When I first saw a speech therapist in 7th grade, she said that I definitely had a speech impediment, and though I can’t find the paperwork, what I likely had (and have) a fluency disorder. My speech patterns perfectly match the description of cluttering, a condition that causes coarticulation, or slurring words together; disfluencies, aka fillers like “um” and “like”; and maze behaviors, which is when you stop mid-sentence to rephrase what you just said or add information you forgot to mention earlier. I also have accessory movements, which are involuntary movements that occur under the strain of speaking, like blinking, looking away, and tensing/jerky movements. Though accessory movements are more common in stuttering (which I don’t have) it all falls under the fluency disorder umbrella.
Everything I just described also match the description of social communication difficulties and repetitive behavior in autism. I do prefer telling people that I have a fluency disorder before getting into the autism thing. The former feels descriptive while the latter feels subscriptive. The concept of fluency disorder focuses on the practical challenges I might face when I’m communicating, without ascribing deeper meaning. The concept of autism, on the other hand, frames my worldview and communication style in a way that can be confusing that requires me to spend a great deal of time and energy clarifying.
The jury’s out on whether I’m autistic, but I like to use more specific labels that addresses the most relevant aspect of my disability.
Being diagnosed and treated for ADHD has changed my life. After all these years, I have yet to receive a diagnosis of dyspraxia yet but to hell with it; I have dyspraxia. While I’m not against self-diagnosis, I also understand it’s not something to take lightly. In my case, it couldn’t be any more obvious.
I struggle to keep my writing in a straight line and spill things when the people around me aren’t. I had delays in learning to tell my left and right, tying my shoelaces, and it took me long to learn to style my hair. IQ tests have consistently placed my visual scanning abilities within the lowest 2-5%. As far as DSM diagnosis goes, dyspraxia is one of the more measurable ones.
The only reason I didn’t receive this diagnosis, well, you got it—bureaucracy. Since my autism diagnosis already afforded me with all the accommodations that a kid diagnosed with dyspraxia would’ve gotten, an additional diagnosis wasn’t on my parents’ priority. Not to mention, some definitions of autism include symptoms of dyspraxia in it.
Long story short, my chances of receiving an official dyspraxia diagnosis depends on whether I could beat those autism allegations. And I’m not wasting another second playing that game. What’s the worst that can happen when I highlight a set of symptoms that has the most impact on my day-to-day life? That someone gets catfished because I’m not sharing my full medical history? Ultimately, I reject the notion that my autism diagnosis carries some unspoken truth about me that I owe to the world.
I’m divesting from my pet theory that my autism diagnosis was a mistake and investing in solidarity. Though many stories that are considered Good Autism Representation™ don’t resonate with me personally, they also help me, in a way.
As more accurate information about autism becomes common knowledge and outdated stereotypes fade, the more I can share differing perspectives without emboldening ignorant assholes—or triggering people who suffered at their hands. And if there are enough people out there with my neuro-developmental “profile,” maybe we could carve out a niche in the autism community. Or maybe we’ll push for a new diagnoses to create more awareness. Who knows?
I’m divesting from my pet theory that my autism diagnosis was a mistake and investing in solidarity.
Ultimately, I want to live in a world where we get to know each other as individual people, and not just by their labels. When I get too worked up about whether I am or am not autistic, I remind myself of other demographic brackets I belong to and how none of them have stopped me from connecting with people who are different from me:
We don’t have to know EXACTLY what something feels like, in order to emphasize, understand, and engage with someone else’s experiences.
I know this because I’m definitely not straight but very much care about my straight female friends’ men problems.
When one of my closest friends broke up with her boyfriend, I cried before she did. I’ve never dated a guy—or anyone, ever, as of now—but in that moment, I felt her sorrow. Another friend wanted my input on which guy in her DMs was worth her time. She’s a bit more traditional—but never judges anyone for being different—and I just want her to get back the kindness she gives to the world, in whatever form it takes.
Growing up closeted has taught me so much. I’ve had crushes on female friends, and know how hard it is to “get over” someone, because I’d get so weird and emotional despite being repulsed by the idea of actually being with them. I also know how powerful our desire for validation is, because I always wanted guys to want me, even when I didn’t want them. Even now; I hear a manly voice, and all of a sudden I’m high-pitched and giggly. What really made me reflect was when I hurt a close friend by leading him on. I kept flirting with him uncontrollably, despite not feeling much emotionally. He handled it with incredible grace and kindness, too.
Ultimately, these experiences have challenged me to build an identity outside the dating world. Those who know me don’t see my outsider status as a mark of ineptitude, but rather, a source of perspective.
Saying that I’m a part of ANY group doesn’t mean that I have to agree with every stereotype that comes my way—not even “positive” ones.
I know this because I’m the nerdy Asian without the classic ingredients; a Kumon membership, violin lessons, and a megadose of filial piety.
My dad listened to NPR while driving me to therapy and my mom ordered me Scandinavian toys for Christmas. Honestly, my family has gone through so much stuff that the world will never know and even I don’t know 100%, but I will say that I was spared from the whole “my parents wants me to be a lawyer or a doctor” cards.
I’m not your Good Asian Girl. Never was. I became a raging workaholic and a smart-ass last year to make up for the years I lost to the brain fog. Allow me to once again cite a Hayley Williams quote: “Lucky for me I run on spite and sweet revenge.”
Even if I’m not fluent in the “social language” of another person, that doesn’t mean that they’re less capable of seeing, hearing, and understanding me.
I know this because some of my most meaningful relationships span linguistic and cultural lines.
A lifetime ago, I spoke Japanese better than English, and now I speak English better than Japanese. Despite this shift, my bond with my Japanese mother has only deepened.
Even though I’m not good at reading and writing in Japanese, I can intuitively grasp the nuances of different words. A funny (not) story: do you want to know how I realized just how desensitized we can be to violence in the United States? Words like “kill” “strangle” in Japanese make me feel uneasy, because I associate it with tragic news. But the word “kill” and “strangle” in English doesn’t evoke that same visceral reaction in me, because it’s used so casually as a figure of speech.
I've been able to form strong friendships with people whose first languages aren't English or Japanese. My best friend from 8th grade, Ilsa, moved from Pakistan due to her parents' job. She was only there for a year, but we were inseparable.
When I met Franchesca and she told me what it was like to learn to speak English, I saw many parallels with my mom’s experiences. Franchesca is a photographer, and you know what they say about pictures. That a picture speaks a thousand words. One of them, she said, is sublime.
“What is sublime?” I asked. (I only recognized that word from that band that sang Santeria).
“Oh,” she said, a bit taken aback.
A vast, indigo blue sky, lush greenery, and a sienna outcrop appeared on the computer screen. I got it.
When I get too worked up about whether I am or am not autistic, I remind myself of other demographic brackets I belong to and how none of them have stopped me from connecting with people who are different from me:
NO diagnosis replaces the work of getting to know yourself, getting to know other people, and communicating clearly.
I know this because I feel like my ADHD diagnosis just makes sense, yet I sometimes need to do a little more explaining so that it makes sense to other people.
For example, many people with ADHD have difficulty with working memory and with “planning and prioritizing,” and so do I—but not always in ways someone might infer by observing me from a distance.
Two years ago, when I was working on one of my many incomplete essays at home, my dad, knowing that I struggle with working memory, suggested that I keep the instructions open in another tab beside me so that I won’t forget what to do. That didn’t help much.
In reality, my difficulty with working memory meant that I couldn’t keep up with the deluge of information coming from the endless readings and lectures. I knew that I had to set aside time to study on my own, but I didn’t know where to start. Not with the readings, but with routine tasks, like picking out my clothes, taking a shower, and deciding what to eat.
Really, I had no time, and like most people in a time crunch, I wasn’t able to think rationally. In that paper, I also stretched my arguments as far as I could to hide my gaps in knowledge.
I want to encourage people to be their own expert, no matter the diagnosis. One symptom listed under a diagnosis could easily be mistaken for another symptom listed under the same diagnosis, and everyone is dealing with something that people may not know about that, that may be completely unrelated to any diagnosis.
Anytime I say I’m not big on labels, I’m not saying it to shut down conversation but to make room for clearer ones. I’ve been mustering the strength to follow through and start some of these conversations, and here is it! I’ve done it.
When I started this project, I quickly realized that I was contending with two main challenges: my disorganized thinking due to my disability, and the dynamic nature of our media landscape, where everyone I spoke to had different knowledge level but have been feeling pretty overwhelmed with all the new information that was coming out. As a student journalist, I took this project as the ultimate test of my ability to articulate complex ideas.
As a student journalist, I took this project as the ultimate test of my ability to articulate complex ideas.
If there’s anything studying journalism teaches you, it’s that you can always ask better questions. Even about a topic you’re still learning about, even about something that doesn’t affect you, whether you’re covering human interest or a press conference at a White House, you get a sense of what questions are good. In my opinion, “Maybe we’re asking the wrong questions” is probably the hottest thing someone can say.
As I write this, I’ve been asking this to myself: Now that I’m getting this off my chest, what will I write about? I don’t think that is a wrong question.
I’m not entirely sure how to best combine my passion for accessibility with my passion for writing just yet, but I’ll continue to use this blog to share personal reflections. Blogging has empowered me to have courageous, sometimes challenging (The most awkward one was telling an ex-friend who left me over my main character syndrome that she was a background character in one of my articles. She offered to talk things through with me, when she could’ve filed a restraining order against me for all I care. Bless her.), and always rewarding conversations with people that I otherwise wouldn’t have had. On social media, there’s a sense of choice, power, and freedom, on both ends, in deciding how and when to engage.
With this memoir, I’ve been able to explore the nuances of my experiences that I once thought were beyond reach. Now, I feel more confident in my ability to expressing my opinions on different topics. I have so much to say about personal growth, spirituality, friendships, cultural trends, healthy media consumption, and finding balance in life.
Anytime I say I’m not big on labels, I’m not saying it to shut down conversation but to make room for clearer ones.
Sometimes, I know enough about politics to have an opinion; other times I don’t. Let’s face it, the world is a MESS. We’ve got jet-setters in suits, boasting a moral compass on a broken clock: loud as fuck, goes in circles, and can be right twice a day. Comment sections can feel like one step forwards, two steps back, with 10 people from 10 different algorithms using big words like "capitalism" and “Marxism” in 10 different ways. And, of course, local journalism is dwindling (great!).
The rest of us are quietly doomscrolling, ashamed of having the luxury to discern, knowing that someone is suffering at the end of the day. Some days I feel guilty for existing. But on our worst days we can remind ourselves that we can BE the change we want to see in the world.
Sometimes all the pro-this anti-that sometimes just feels like “love and light” in dark mode. As a culture, we tend to discus things vaguely, and exploring the media ecosystem surrounding my disability has shown me how deeply ingrained this issue is. We suck at pinpointing where our thought processes diverge, and as a result, we assume the worst about each other.
My journey through identity, belonging, and mental health is my forward momentum.
Though my focus as a writer will always be on sharing personal experiences, I also hope to use my voice to help society become less polarized. Depolarization, to me, is not about congratulating people for walking around with a white picket fence up their ass and yelling at other people to Be Kind. It’s about encouraging collaboration. Some of us are good at proposing practical solutions, while others work out failsafes and contingency plans. Some of us are good at holding the powerful accountable while others are good at addressing the fears of the misinformed. It’s easy to pledge our commitment to Who and Why, but it’s much harder to do the messy work of sorting out the Where, When, Which and How. We need each other, even when it doesn’t feel that way.
My journey through identity, belonging, and mental health is my forward momentum. But it’s also responsible for the doubting voice in my head that says, “But who am I to…” When I was struggling, I blew so many people off, broke so many promises, and said some very nasty things. People want to hear from someone who’s been there, done that, but for the person sharing, it’s petrifying. Sometimes it feels like I’m waiting for some factory reset where I’m clean enough to speak. At what point could I share my thoughts, observations, and concerns, and be seen as sincere—not a bad-faith argument or a last-ditch attempt to win people over?
The stark contrast between my writing skills, and my ability to manage most other things is like the archetypical kryptonite in every movie ever. It’s pure bliss, when strangers call you an asset, a shining example of what happens when a person with a disability can use their strengths to overcome their challenges. It’s sheer agony, when you’re staying up late crafting yet another apology text, wondering when the benefit of hindsight veers into the advantage of revisionism, when self-awareness turns into impunity, and you’re just another gaslighter for hire.
To be human is to be scathed. If being good was easy, then we would have world peace. I once read something on Instagram—I wish I remembered from who—that said we have two choices: confine ourselves to a fear-based life or move towards a value-based life, even if the path ahead seems uncertain. I won’t let my fear of being called calculating turn me calculating.
And so I write. I write defiantly and imperfectly, clinging onto the faith that this main character arc leads to an odyssey, not a psychological thriller.
Previous chapter:
https://pubmed.ncbi.nlm.nih.gov/1273628/
https://en.m.wikipedia.org/wiki/Deficits_in_attention,_motor_control_and_perception