I was diagnosed with Asperger's Syndrome in early 2018. It wasn't a massive surprise, as I'd already been doing some digging around to figure out the real roots of my lifelong social anxieties and fears. But still, the entire process from realization this was a thing to actual diagnosis only spanned about 3 months.
Asperger's Syndrome is marked by significant social deficiencies, enhanced perception of the world around us, and special interests that can drive us to focus intensely in on a single task for hours on end without even noticing.
Like coding!
Over the past 6 months in particular, I've discovered that there are so many of us in tech, and in the world at large. A lot of DMs I get after posting something with an #ActuallyAutistic hashtag, or talking about it openly during a Twitter chat. But tech is a very appealing industry for Autistic people who are fascinated by all kinds of things... data, patterns, automation, structure, and more.
The weird kid that struggled silently
I began to notice that I was "different" when I was young, probably around 6-7 years old. I was the girl running around the playground on all fours, oblivious to the weirded-out expressions of the kids observing me.
I often ate lunch by myself. One of my first real childhood friends was a girl who sat with me and took interest in a project I was working on by myself on the lunch table. It was a map of the social hierarchy of my schoolmates.
She had artistic skills, and offered to draw it out for me. I was delighted... she was willing to help make it something real?
We decided to draw it out as a building, with some outside fire stairs and a hole in the ceiling on one of the floors or something. We worked together for days and talked about how people became "popular", what was redeemable social action and what was not, and how one could navigate the different levels.
I did not have very many friends, but the few I did have, I was extremely invested in. Friendship in and of itself is a little bit of a confusing concept for me, and I had to work hard to understand the ability to have a close, meaningful relationship with someone.
The social results that came from emulating others' behaviors in such types of relationships became more natural for me over time. I kind of learned to be a human.
Along with the Asperger's diagnosis came a Non-Verbal Learning Disability (NVLD) diagnosis. Basically, I already knew I sucked with mathematics, and basically anything that wasn't verbal or auditory-based. If I didn't have a mental model for it, it was lost on me.
I was a little angry at first that they'd been overlooked all of these years—like the academic system had totally failed me. I had even been picked up by the Center for Talented Youth at Johns Hopkins at a young age, their program for gifted students.
My verbal skills were through the roof—the top 1% of their program. By 5, I could rattle off lists of words while playing with a toy—my mind was fixated and it amazed everyone who witnessed it. I remember most of the lyrics to a song in about 4-5 passes. I could probably use that brain space for other things, but at least I'm good lyrically. 😂
But my math and more non-physical, abstract sciences like chemistry and physics? Oh lord, it was abysmal. That discrepancy was what caught the attention of the program, who then passed the process off to my grandfather (my guardian). I wrote this story called "Blue Blocks" about it as part of my "Late Diagnosis" Medium series, and it's still heartbreaking for me to read.
As a result, I struggled through school all my life, and put SO much pressure on myself to perform to others' expectations of me... and most importantly, the impossible standards I put on myself.
I had managed to get through 4 years at Wellesley College, but the experience was grueling, and it didn't come without costly mistakes. I abandoned a Computer Science degree in 2004 when I hit Data Structures and Algorithms, which I later realized was considered a bit of a "weed out" course. The material was just too much for me.
How I experience tech
Being in tech is a wild experience for me. On one hand, I feel like I'm in my comfort zone. On the other hand, I feel like I'm always going to be a newbie.
But now that I know the hand I was dealt... I can play the game differently. I can let go of the things I'm not good at, and the shame that comes with their associated challenges. Instead, I embrace those I excel at.
First, we'll start out positive. It's one BIG positive.
I have superpowers
People on the Autism Spectrum are amazing. Like, everything I've talked about above is negative, but now I want to highlight the really incredible parts.
I recently watched Umbrella Academy, and I felt it on so many levels as an Aspie.
SPOILER
Vanya's realization that she had superpowers that had been suppressed for years was in direct alignment with my own experience. She was angry, naturally. And so was I... but I didn't go destroying the world over it. 🙄
SPOILER
Specifically, my superpowers are: empathy, compassion, communication, and pattern recognition.
Say what? Aren't those the things that Autistic people struggle with, and that I just said come difficult for me?
It's nuanced, for sure. All of these questions are questions that I had, so I get it. But people on the Spectrum can have incredibly deep connections with others. It kind of filtered through my entire life, but never got a chance to really shine until my diagnosis. It was mostly that debilitating anxiety that brought me to the neuropsychologist that kept me from feeling confident.
It's important to note that because people on the Spectrum feel and express all three—empathy, compassion, and communication—on such a deep level... it's absolutely heckin' draining. I'm definitely a cannon, not a machine gun.
There's a misconception that people with Asperger's/ASD are always socially poor. This isn't the case, especially with women who apply "masking techniques".
In fact, I had no idea there were so many differences between men and women when it came to the Spectrum. All we see is white boys being diagnosed, right? I'm a woman of color.
Girls and women are socialized differently, especially in societies of color. We're expected to be nurturing and understanding. Caregivers. If you don't fit this mold, you might be a social outcast. I learned this early on, and worked really hard to build those skills from an early age.
As a result, I have these amazing caregiving skills. They've helped me keep my family together, support my 87-year-old grandfather, and build deep connections with others.
It's also what's allowed me to organize and engage in communities. I feel deeply for every single one of you, especially if you're reading this. I want to see you succeed. I'm invested in your outcomes. That is a fact.
The pattern recognition one has always been a thing in my life. In fact, I never realized it was atypical for people to quickly recognize and identify patterns in things. I was intrigued by music and the structure and repetition, and how different chords evoked different emotions in me. The feeling it evoked was exciting to me.
So, this is obvious all good stuff to bring to tech! Y'all are blessed with me, tbh. 😘🤣
Math still sucks for me
With so much focus on "hard tech skills", it was easy for me to feel like a massive imposter at first. In the beginning, without my diagnoses, I just blamed myself for my struggles. I wasn't able to apply mathematics to my code easily, even for basic functions, and that was a blow to my ego.
There are lots of math-savvy people in tech, and I've had to accept that I'm simply not one of them. 🤷🏽♀️ I feel now like that's totally OK—because I'm me, and not those other people.
I'm not as strong with socializing as I come across on Twitter
Ok, so this might seem a little weird, but you know the Sims? When one Sim interacts with another and the interaction goes over well, there's little plus signs and your relationship level goes up?
That's how I see social interactions. Always.
I've learned that Aspies don't usually tell people this. Because it makes people feel uncomfortable, or like our interactions aren't actually genuine. But you need to know if you want to understand how people with Asperger's work.
Additionally, if you notice me kind of zone out during an in-person conversation, it's because I'm kind of mentally shuffling through some pre-existing perspectives and responses like a catalogue of slides. If the slide fits, I use it.
I hope to glob I get the right slide for the right situation. I wasn't good at this as a kid, and I upset a lot of people. Double Sim negative points and angry Sim grumbling and stomping.
I often can't remember people's names or faces. Please don't think I'm rude for this. It takes me a few times. If you tell me something interesting about yourself, or a joke or something, and I'm more likely to remember you. This is really embarrassing for me a lot of the time, so I just ask for your patience. ❤️
This is just the way I have to work, guys. Pay attention to the way I make you feel, and what I'm saying. Don't worry so much about the intention behind it.
I'm easily overstimulated, especially at social events
Like I said, social interactions just get weird for me. If it's really intense and I'm not expecting it or otherwise don't have control of the conversation... I might start crying.
Seriously. This has happened at conferences. I had people complimenting and "fangirling" (their words!) over me at Codeland, and it got to be a little too much for me. They didn't do anything wrong. It's just a lot to process.
It's not that I'm sad or upset, I'm just overwhelmed and overstimulated. You might find me crying in a dark conference room after a talk. Please don't be alarmed, I'm just giving myself some sensory deprivation.
Autism acceptance, not awareness
I've read a lot in my online Autistic communities about April, which is often known as Autism Awareness Month. There's a lot of issue taken with the word "awareness".
We have enough data by this point to know that Autism exists. That's not the root of society's issue with us. The root of the issue is that society's norms don't accommodate or look favorable upon those area in which we lack. All I ever really wanted was to be accepted for who I am, social quirks and all.
Now, at 33, I feel like I can finally express myself and be accepted. But it's really sad when I think about that lost, confused, and lonely little girl that had no idea what she was doing wrong. I just want to give her a hug and let her know that it'll all be okay. That she's not broken, she's just different.
Unique.
Special.
Powerful.
Beautiful.
It's really hard knowing what I know about myself, and hearing people in the world calling for a cure. I wouldn't change my experience in the world if you paid me. I experience the world vividly.
Tech excites me, because I see all the patterns and structures, and patterns excite me. They make me flappy... which I can now do publicly because I literally don't give a shit anymore and it's liberating as hell. 😂
This whole picture of me as an Autistic woman culminated in a lifetime of struggles and difficulties for me. I simply can't identify with anyone who came into tech naturally. Without extreme adversity.
I didn't even have a name for any of it until last year. Now I do. So I can tell people what I went through, because I realize that they haven't gone through it themselves.
I normalize things pretty quickly anyway. On D-day, I was just like "cool!" and skipped off to process and connect things. I never gave myself a chance to feel shame about my experience. I mean, why would I do that to myself? I accepted that part of myself pretty damn fast, because it wasn't a shock.
If you want to celebrate Autism Acceptance Month, there are some things you can do.
DON'T:
Do NOT donate to Autism Speaks. I cannot encourage this enough. The organization as a whole is run by non-Autistics, and they encourage finding a "cure" to Autism over encouraging social support of our gifts. Lots of reasons here and I recommend you read about them.
Use blue ("light it up"), or those damn puzzle pieces. Apart from being originated by Autism Speaks, there are other reasons for this that I linked. I recommend reading them if you're interested in learning why.
Ask Autistic people to do a lot of labor to explain themselves to you. We really are out here writing, and like I found articles to link with a simple Google search.
Assume that Autistic people are white boys. We're not, and I'm proof.
DO:
Educate yourself with resources written by actual Autistic people
Donate to organizations that help Autistic people thrive, like:
** Asperger/Autism Network (AANE)
** The Organization for Autism Research
** The Autism Society of AmericaFocus in on the brilliance of your Autistic friends, and make sure they have what they need
Final note
I want to say that individually, each of my expressions of Autism can be applied to a lot of different disorders and syndromes, like ADD/ADHD and general high sensitivity.
I tell people now, I thought the same thing. You read these lists of symptoms and feel like "oh, I'm like that!" But really, it's the whole picture. When you read or hear it, you just know. That specific combination of symptoms perfectly explains all of your soul-crushing experiences throughout your life. Experiences that cause deep trauma for anyone on the Spectrum. Being diagnosed is freeing.
If anyone has any questions about my experience, I'm an open book. Seriously, just go ahead and post in the comments. Someone else probably has the same questions, or a misconception to be restructured. At the very least, I'll point you in the direction of some resources. 😊
Top comments (8)
Wonderful article, Nicole! It was great to read about how you've taken your late diagnosis and really accepted it without letting it define who you are and where your success can be.
While I have the attention of those reading your article, I would like to take the opporunity to mention people-first language. It helps to reiterate the fact that under all of the diagnoses and seemingly-strange behaviors there is a person.
Thanks again for the great post!
Lots of recognizable things. Although with me the skills are the other way around. I'm very good at math and bad with languages. I'm 35 now got diagnosed about 10 years ago. I ain't as open about it as I probably should. But I find it very hard to explain. Common reactions are like 'everybody is a bit autistic' which feels like they are just ignoring it.
If you're in a comfortable position (like you're not endangering yourself somehow), you should totally share! Not everyone talks so openly as I do about my path to diagnosis and beyond. But someone has to. That gift of communication is what's allowed me to find the words to relate what's going in my bucking bronco of a brain. It's let me ask for what I need to thrive in society. It's helped me crush some pretty shitty misinformation and stereotypes.
And yeah, that's really dismissive and not cool. My response is that they cumulate as an entire story. A painful one. If they haven't experienced the deep traumas that come with being judged for that combination of aspects in your life, their opinions don't matter. 💕
Cool article. I'm 17 and have Asperger's not well in math but can see in dimensions not seen by anyone in my class not sure if that is significant or not. Also a massive Linux geek
"[I] can see in dimensions not seen by anyone in my class"—yes sir, this is your superpower :) And Linux is probably one of your special interests. I could focus in on various aspects of my work for HOURS and not even notice. It's wild.
It's strange (and nice) to see a fellow aspie who's like the opposite of me and some autistic friends who are great with logic but fall short with communication (probably due to the Agenesis of the Corpus Callosum).
Another auspie here :)
Loved your article, spot on.
Great article! I can really relate to some of the things as someone on the autistic spectrum myself.