“We should’ve known. We should’ve known.” I mumbled while shaking my head, as Mom and I walked back to the Xterra after spending nearly four hours in an office in downtown Seattle, talking with one of the best autism evaluation psychiatrists in the world.
I walked into that colorful doctor’s office still in denial about the theory that I’ve always been on the autism spectrum. After all, throughout my life I’ve seen numerous therapists ever since I was four years old. None of them ever mentioned the possibility that I may be autistic, including those who had decades of experience working with all sorts of people. At least, not until I started seeing a different therapist shortly after my eighteenth birthday, who within just a few sessions, mentioned she was certain I was autistic.
At the time, I scoffed at the idea, as I believed autism diagnoses was given to those who had something very obviously wrong with them. But, I buckled down and did some research and remained open-minded about possibly being on the spectrum. The more I learned about the autism spectrum and about myself in therapy, the more I realized that I could very well be on the spectrum. Still, I remained stubbornly in denial. Logically, I knew (and know) that being autistic isn’t anything bad. It’s still called a disorder, but it’s really not. At least, not in the traditional sense. Autism is just a different way of viewing the world, and it’s difficult for people with Autism to navigate the world, as the world’s built around people who do not have Autism, AKA, neurotypicals.
But, my appointment with the Seattle autism doctor dispelled all of my doubts about being on the spectrum, especially when my mom began to reveal information about my early childhood that I don’t think she really thought about until we were seated in front of the doctor who asked very specific questions about how I was as a child, from the time I was a newborn up until the present day. I walked outside into the chill, windy air after that appointment absolutely certain that I’ve always been on the spectrum. Even the doctor told us, “There is no doubt you’re an aspie!” (An aspie is someone with Asperger’s syndrome, which is now called Autism Spectrum Disorder, or ASD for short).
Holy shit, looking back, it’s so damn obvious that I was on the spectrum even when I was very, very little. I had all the classic symptoms: hyper-fixations on very niche subjects such as light fixtures and lizards, a strong aversion to touch and loud noises (especially sudden noises and shrill noises), repetitive behaviors such as rubbing my hands together and cracking my knuckles (which I still do), and lining up my little toy animals and/or taking apart and putting together the same Lego set for hours and hours, being socially distant and even somewhat fearing other people and kids my age, struggling to make eye contact and pick up on social cues, and much more.
To be fair, my parents were putting all of their energy and then some into keeping me alive. So, I don’t think they really made sure to keep track of my typical milestones. Instead, they were focused on getting me off the ventilator and out of the hospital, and keeping me at home as long as possible. Then, when that didn’t work, they somehow managed to get me to come home while still on life support. My parents literally had to take shifts at night to watch me sleep for the first several months of my life, making sure I didn’t struggle to breathe or stop breathing altogether. There were many moments when I did start to hyperventilate or something else went horribly wrong, resulting in my parents having to call an ambulance.
Whenever they brought me out of the house or the hospital, I hung out in a harness on my parents’ chests, while they carried a backpack containing all of the medical equipment keeping me alive. They had to deal with nosy people wondering what was wrong with me, some of whom shamed my poor, young parents for keeping me alive when I was clearly suffering too much and should’ve been aborted (yes, people are really that shitty). My parents could never really relax, and were really at their wit’s end. Thankfully, they had friends and family to turn to for help. But, no amount of love and support from friends and family could calm my parents’ very real fears about how I could be fine one minute and literally stop breathing or have a cardiac arrest and die the next, without any warning whatsoever.
Needless to say, I’m not at all shocked that it took my mom a few minutes to recall what my first words were, or when I took my first steps, both of which are things that are usually very memorable, while we talked to the doctor at the autism center. Even when I called my dad after my autism evaluation, he could barely remember what my first words were or what it was like to watch me take my first steps. My parents, family, and close family friends (who are more or less family) who’ve known me my whole life, were all too focused on keeping me alive, that they just missed so many of my typical (and atypical) milestones.
Even when CF and Pulmonary Atresia failed to kill me, and I grew up into a toddler, then a preschooler, then an elementary student, my parents weren’t as concerned about my quirks as some people believe they should’ve. For instance, in preschool I always played alone and I went out of my way to get as far away from the other kids as possible. Whenever the teachers had us kids sit in a circle for whatever reason, I couldn’t face anyone. I sat with my back to the students and the teachers, and usually appeared to be distracted. Yet, whenever I was called on to give an answer, I responded immediately with the correct answer. And, I always had a little toy animal with me that I usually brought from home, which I did up until second or third grade. At first, the teachers were a little annoyed by that, but my parents just told them it was normal and even if I seemed distracted, I wasn’t.
When I stopped taking little toy animals to school, I spent my days doodling, which really irritated my teachers throughout the years. Very few teachers catered to my doodling, especially when I reached middle and high school where I was expected to be more “mature” than that. No matter what my parents said about my doodling, the teachers didn’t care. Many teachers thought that since my parents weren’t in the classroom, they had no right to say that I wasn’t distracted whenever I doodled in class, completely ignoring the fact that I was a doodler at home too, and used doodling at home to concentrate just like I did at school.
Of course, as I grew up I could mask my autism a little better, but I could never mask it fully. It was very clear throughout my entire life as a student that I learned very differently than usual. I’m still not over how many of my teachers and peers treated me. I can admit that in retrospect, some incidents are kind of funny now, such as the time my eighth grade math teacher grilled me for being able to do senior-level math on the online state test (which took me twenty minutes to complete when we had almost two hours to complete it) when I “didn’t understand” math in his class and was on the brink of flunking it. Back then, I didn’t know what to say to that. But, today I know that callous sumbitch graded me based on how I got my answers, rather than the answers themselves (which were almost always correct), and I've come up with a million snarky responses to my teacher's rant.
It wasn’t until the middle of eleventh grade after I almost died due to a combination of Pseudomonas, mold, and the flu, and ended up in Homebound where Eric became my teacher, that I finally was credited for getting the right answers rather than being scolded for not doing the math the “right” way, whatever the hell that means. I’m still pissed that I had to literally almost fucking die in order to get the help in school I’ve so desperately needed my whole life. Even then, my mom had to go full-on Karen to get me that help, which even she was reluctant to do because she was afraid I’d miss out on the crucial social aspects of high school if I finished it online like I did.
But, I joined the writer’s group and still had to leave the house everyday to attend school for an hour a day at the library, which seemed to put my mom at ease for the most part. Still, she wasn’t too happy with me when I declared I’d never go to Tuesday or Wednesday night (I can’t remember which day it was at the moment) bible study, because I was still recovering from Pseudomonas that spring and summer and coughed up a mortifying amount of mucus on my arm in front of everyone in the church.
That, and sometime that summer after school, I turned onto my street when I noticed some big, burly construction dudes were working on something in the house, but my mom wasn’t there. So, I waited for another forty minutes in the summer heat for my mom to come home because I was more afraid of coming off as rude or awkward to the guys working on our house than I was of passing out of heat stroke. Yeah, my mom wasn’t very impressed.
Of course, all of this and more happened long before anyone ever even mentioned that I may be autistic. Most people seemed to agree that I was just traumatized and needed to heal from that, and once I healed from the past (or more accurately, got thrown to the wolves over and over again until I figured out how to properly socialize with people and stifle my anxiety) I’d be normal. If only I’d been tested for autism way sooner. If only someone had pointed out that I may be on the spectrum sooner. Looking back, my autism has always been ridiculously obvious. Yet, for some reason, not even the most experienced psychologists we met ever suspected it.
But, I guess I just can’t dwell on the past. I cannot cry over spilled milk. The past is the past. What is done is done. As badly as I often wish I could, I don’t have a badass 1980’s Delorean that can go back in time, so I can find and tell my young parents about what their future with me held. I just have to be thankful that I found out about my autism while there’s still time to do something about it. In my case, this will help ensure that my college years will be way smoother than I thought they would be.
In the meantime, I’ve been told to just work on accepting my autism and coming up with ways to better communicate with people not on the spectrum, and vise versa. The doctor who evaluated me told me, over and over again, that being autistic isn’t a bad thing. He put it this way:
“What’s the difference between Mac computers and PC computers? Their operating systems. They can more or less do the same things, but just differently. If you try to get a Mac and PC to communicate with each other without help, what happens? They can’t. But, there are programs people can download to make it possible for Mac and PC computers to communicate with each other. What does this have to do with autism, you may ask? Well, you as an aspie, are a Mac computer trying to get on with life in a PC world. The ultimate goal isn’t to turn you into a PC. Instead, the goal is to help create programs that you and others can use to better connect with each other, without making you “less autistic” or other people “less neurotypical”.
You should still tap into what makes you unique. There are many advantages to being autistic. It is clear that you are extremely intelligent, can adapt to new situations better than most people on the spectrum, and you’ve held eye contact with me this entire time, which is also remarkable. Also, you’re highly creative and resourceful, honest and respectful, empathetic and gentle. You’ll be able to become a successful, functional adult even in a world not built for people like you. Make sense?
There’s so much to be excited about. Your future is very bright, especially since you’ll have access to the help you need. I can promise you that!”
Those words will forever be branded in my mind. It was such a beautiful way of putting it. In fact, it brought both Mom and I to happy tears.
It will be a couple weeks before we get all the paperwork delivered to us that we need to take the next steps. But, when that paperwork arrives, I’ll go to an adult autism center of excellence in downtown Seattle, that is considered the best place in the world for people like me to get the help and support they need to be successful. As a result of all this, I’m no longer dreading my future, and I’m starting to let go of a lot of the anger and hatred I’ve had towards myself for being so autistic. My future does seem bright, even though I am on the autism spectrum.
Besides that, I’m going to work on embracing my autism rather than pushing it away. Sure, I’m not gonna tell everyone I come into contact with that I’m autistic, but I’m not gonna attempt to hide my quirks. I’m not gonna just say “fuck y’all, I’m never gonna learn and change” either. I really do want to learn how to communicate better with people different than me, because I know (from experience), that I’ve unintentionally hurt a lot of people. My little brother, for instance, still doesn’t believe I love him because I don’t show affection by hugging and kissing my loved ones, or even telling my loved ones that I love them. Instead, I show affection by doing things for people and giving people gifts, as well as telling people to “stay safe” and “see ya soon!” whenever we part ways. For my brother’s twelfth birthday, I bought him a dozen boxes of Pocky sticks and several bags of gummy bears since I know those are his favorite candies. I also helped him put his room together when we arrived in Gig Harbor, and every week I make sure to vacuum his bedroom and take any of his dirty dishes downstairs that I find while I’m cleaning the house.
It truly hurts me to know that my little brother doesn’t think I love him, because I do. I’m just not entirely sure how to prove to Jack that I love and care about him, besides what I already do. If I can figure out how to convince Jack that I love him, that will make it easier for me to communicate my love towards others who are different from me, especially as I grow into an independent adult and start to make my own friends and truly become my own person.
Beyond that, it would be nice to know how to introduce myself to people rather than wait on someone to “adopt” me. Right now, starting a conversation with a stranger is like trying to describe the color magenta to a person who was born blind. It’s next to impossible to me. Even when a stranger introduces themselves to me and initiates small talk, I have a mental script I consciously go through while I’m trying to keep the conversation alive and prevent it from getting awkward. If the person I’m talking to diverts from the script, and/or does something I wasn’t expecting (such as reach out for a handshake in the middle of our conversation rather than at the beginning), it’s hard for me to figure out how to react, resulting in awkward half-handshakes and long moments of painful silence.
Then, of course are the countless times I've unintentionally offended someone. And, to this day, I don't know what I said or did to piss some people off. The only thing I've learned so far is when a person asks you, "What are you up to?", most of the time they're asking if they can join you, and get offended if you don't say something like, "I'm doing X. Wanna join?", and instead explain it to them in great detail. When someone asks me "what are you up to?", my first instinct is to tell them, in great detail, what I'm doing, which apparently comes off as patronizing to most people. However, whenever I ask someone, "What are you doing?", I'm not asking to join. I really just want someone to explain to me what they're doing in great detail. If I want to join, I'll ask if I can. Otherwise, I'll just move on, which is apparently also considered rude to neurotypical people.
There’s so much more I could go on and on about, but since it’s like 4:00 AM and I have yard work to do in the morning before it rains, I better stop typing and get some rest. But, I just felt I had to get some of this stuff off my chest and on screen before I went to bed. My autism diagnosis is a lot to process and accept, and it will be a long time before I’m comfortable with it. But, I’m just glad that my future is bright, and I won’t just spend my whole life holed up in my bedroom under my mom’s roof like I was convinced I would when I was first told I was likely autistic.
Note: Looks like this piece is gonna turn into a "first draft" of my memoir piece on Autism. Right now (and probably later when I'm actually writing for the book), I'm processing so much so quickly that it's hard to put it all together smoothly. Hopefully, by writing about being Autistic here, and discussing it with y'all, it will be easier for me to write about it in a way almost everyone who picks up my book can understand what being on the spectrum's like for me.
The news of my recent diagnosis spread throughout my family like wildfire, which I really didn't want to happen. But, I knew it was bound to happen since my family has a habit of oversharing with everyone who is willing to listen. So, I decided to pick up the phone early and reveal my Autism diagnosis to a handful of people who are close to me in an attempt to take charge of my diagnosis, instead of totally allowing my mom and other close family to try to speak for me.
Out of all the calls I was nervous about making, I wasn't looking forward to having a discussion about my Autism with my conservative grandparents. After all, as loving and caring as my grandparents are, they aren't exactly the most understanding people. My grandma Connie has never dealt with anxiety and depression, and has always been very happy-go-lucky no matter what. And, my grandpa Lyle has always been a "problem solver", but not all of his solutions to my issues (such as praying my depression away) really work. Of course, he is patient with me, and he's never said anything to intentionally hurt me. But, still. I wasn't looking forward to talking to my grandparents about my ASD diagnosis.
When I called my grandparents, turns out they'd already gotten a call from my mom about my diagnosis. I think because my mom called them first and gave them a somewhat brief overview of my ASD, my grandparents were more understanding of it than I thought they would be, and not once did they ever talk about my ASD as being a bad thing or something to be cured. In fact, it was quite the opposite.
"I'll always remember how inquisitive and creative you've always been," my grandma Connie recalled, "You were always intensely interested in one niche subject after another, and I always enjoyed listening to you talk on and on about whatever it was you were interested in. If you weren't talking about it, you were either drawing it or watching videos about it. I was always so perplexed by your ability to hyper-focus. When you were between the ages of two and five, you could sit still for hours putting things together and taking them apart again.
I also remember the time you spent literally an entire day building paper airplanes with grandpa; from the time I left for work to the time I returned home. The first floor of the house was covered in a blanket of paper airplanes, and there were many more upstairs. I'm still not sure where you guys got all that paper! We literally had to use the snow shovel to clean them all up! Ah, I've never seen another little kid be so interested and passionate about one specific thing for so long. Every other kid I interacted with - up until I met you - couldn't be interested in one thing for more than ten minutes at a time. Watching you grow up was absolutely amazing! I strongly consider ASD to be nothing but a blessing- A true gift!"
My grandpa recalled similar things about me in the same excited tone of voice as my grandma. My grandpa fondly remembered taking me to my great uncle Courtney's house when I was no older than four years old. My great uncle noticed that I was extremely interested in the taxidermied animals that decorated the walls of his house. When he asked if I knew what the animals were, I correctly named every animal on the walls, and even shared a few interesting facts about each one. Uncle Courtney was simply blown away by it. He figured he'd add fuel to my obvious interest in nature and animals by sharing pretty much everything he knew about North American wildlife from his days as a hunter, hunting guide, and game warden. Uncle Courtney also gave me a few pieces of taxidermy, as well as a handful of wildlife pocket guides, nearly all of which I still have today.
From then on, both my grandpa and great uncle went to great lengths to ensure that fire in my soul was kept going and put to good use. It all eventually led to me getting my hunter's license, which I got by passing a 150 question test with a perfect score, and showing the hunter's safety course instructors that I could load, fire, and unload various firearms, as well as correctly identify the calls, tracks, fur, feathers, and scat of wild game. After getting my hunter's safety license, I was out hunting within just a few short months, where I scored a trophy tom turkey on my first hunt.
But, my ability to zero in on very specific things and topics has been advantageous in more ways than just that. I'd argue that it aided in my survival as someone with CF. Like how I love to learn about nature (more specifically, about the native nature that surrounds where I live), I love to learn about the medical things that afflict me, such as Cystic Fibrosis. To me, knowledge is the best thing ever. Without it, we are in the dark, and being in the dark is never good. For me, being in the dark about things like CF is absolutely petrifying. After all, how am I supposed to prepare for and deal with the shit coming my way if I don't see it coming in the first place? Truth is, I can't. So, I do all the research I can and ask my doctors tons and tons of questions so nothing that comes out of left field is entirely unexpected.
Thankfully, my current CF doctors (especially my current main CF doctor at University of Washington) love to teach me about all the complicated ways CF works, as well as admit when they don't really know what's going on (honesty is also important, ya know). In a sense, not only am I the guinea pig in a lot of ways, but I have a say in what happens to me next. For instance, as of December 2020, my doctors are aware of the fact that there are many different kinds of salt chambers in every cell of my body that CF impacts. More specifically, CF impacts a single type of salt chamber in my neurons in the "lizard" part of my brain.
In normal people, this specific salt chamber in the primitive part of their brain usually remains closed, unless something happens that requires the brain to kick into "fight-or-flight" mode, in which case that salt chamber opens to give those "fight-or-flight" neurons all the energy they can get to keep the person alive.
In CF, that chamber is almost always closed, even when the person goes into "fight-or-flight" mode, because as we all know, the root cause of CF is the body's inability to process sodium correctly. Now, thanks to Trikafta, all of my salt chambers are much more open, including the "fight-or-flight" salt chamber. While this means my body physically functions more normally, it also means I'm perpetually in this physical "fight-or-flight" mode because that specific salt chamber in my brain is stuck open thanks to Trikafta. This theory explains my anxiety/depression associated with Trikafta are so much more physical rather than mental. Doctors don't know exactly why Trikafta works as well as it does, or how to fix this specific problem in the brains of 40% of people on Trikafta. And, scarier still, only 20,000 people worldwide are on Trikafta, most of whom just started Trikafta within the last few months or so (whenever the EU approved it). I was one of the first 5,000 people in the world to start Trikafta.
While I find the science surrounding CF and the medications I take extremely fascinating, it's also the stuff of nightmares. I mean, I still don't know how to feel about the fact that I'm literally a living, breathing science experiment, and I'm on the frontiers of some extremely important science that is literally going to be considered one of, if not humanity's greatest achievement, as the next best thing to Trikafta will be a literal cure to CF that does not involve gene editing while one is still in the womb. I try not to think about it too much, because of just how overwhelming it is. But, it's exhilarating. At the same time, it makes me literally tremble in fear just thinking about it.
It all comes down to being in the dark about very serious things. I don't mind not knowing if there's life in the universe besides us. I don't care to know how many asteroids that are capable of ending the world are hurling towards us as I type this. However, I do care about knowing what CF is, and why Trikafta does what it does, as do my doctors. Unfortunately, my doctors still don't know a lot about how Trikafta impacts people like me. The things we do know about it (such as the "fight-or-flight" salt chamber issue) create more questions than answers. This certainly contributes to my anxiety, on top of everything else going on, and I'm not sure how to really cope in a healthy way. Right now, my coping mechanisms include sleeping excessively, keeping myself as busy as possible at home, playing World of Warcraft until it feels like my eyeballs are about to fall out of their sockets, and researching the shit out of everything that scares me right now.
I am very thankful for this insufferable curiosity of mine that keeps me sane, and treats serious problems almost like an escape-room type game. When it comes to the issues associated with Trikafta, my current objective is to work alongside my doctors and scientists to figure out what works and what doesn't, without doing anything too reckless or dangerous, so I can escape this mental anguish Trikafta is partially responsible for. Of course, it's scary and I'm not exactly willing to play this game (just like how I don't like real-life escape rooms). But, I have to help solve this Trikafta issue, not just for my sake, but for the sake of others who will be prescribed this medication as well, even though I don't want to do it.
This profound sense of "I have to do this for the sake of myself and others even if I don't wanna" isn't just limited to this one specific issue. I've always been willing to take risks like this, which is apparently an aspie trait. Why? I don't know exactly why, but I do know it's definitely spurred on by my thirst for knowledge, not so I can brag about having bigger balls or being bigger brained than my neurotypical peers. But, because I was born into a very, very unique body that I have the moral obligation to use to help further science's understanding of the human body, so those who are born into similar circumstances can survive without having to go through the things I've unfortunately been put through. Also, I just like learning about this kind of shit. Science is cool! That, and knowledge puts me at ease. It makes my world a little less uncertain, and therefore, my world is a little less scary.
Now that I'm officially diagnosed with ASD, I feel a sense of duty to enroll myself into ASD-related studies, just like I've been taking part in nearly every CF-related-study I've been offered. Thankfully, the ASD I have isn't nearly as dire as CF, but it impacts a hell of a lot more people in the world. Last I checked, CF affects about one out of every 250,000 people worldwide, while ASD affects about one out of every forty people worldwide. So, why not let scientists dissect my ASD, much like they have (and continue to) dissect CF? Truth is, I have no reasons not to serve the world by letting science study me.
As you could probably tell from those previous paragraphs, science, more specifically natural science, has always been one of my "special interests". People with ASD tend to have a very narrow list of hobbies and interests (also known as special interests), compared to most other people who tend to have a wide range of hobbies and interests. For me, my hobbies and interests have always surrounded nature and science. It is why instead of watching cartoons and playing "pretend" when I was little, I was always watching nature shows with my realistic toy animals on the coffee table in front of me, or with a big stack of paper and a few pencils on the coffee table where I'd spend my days drawing the nature I saw on TV.
As a result, I got very good at sketching out animals, though I never learned how to draw humans. I'm sure if I buckled down and really worked hard, I could draw a decent picture of a person. However, it would be tough. I wouldn't enjoy drawing people nearly as much as I enjoy drawing nature and animals. I don't have a hard time relating to animals, but I've always had trouble relating to other humans.
I don't study humans like I study animals. I can stare into the massive, golden eyes of a Great Horned Owl all day, but I can barely stand making intense eye contact with other people. Eye contact was actually damn near impossible for me until I reached high school. But, even in high school and beyond, keeping eye contact with others and trying to relate to them was exceptionally difficult for me to do. But, I could (and still do) relate to animals way better, which explains why my doodles have always consisted of lions and Bald Eagles, rather than of people and houses.
I don't really have the words to explain why I relate to other animals better than humans, other than animals tend to be way easier for me to understand. While I can learn the nuances of interacting with humans, it has to be explicitly pointed out to me and explained as I usually can't just pick it up via osmosis. However, animals tend to be very explicit with their behavior. If a horse is upset for whatever reason, they'll pin their ears and sometimes pull back their lips to show their teeth. If a dog is happy, they'll wag their tail. If a cat feels very safe, they'll roll over onto their backs exposing their chests (which is considered a very vulnerable spot). As a result, I feel very comfortable around animals since they're so easy for me to read and understand. And, for some reason, animals seem to gravitate towards me too.
Meanwhile, most people I know aren't very good at expressing their needs and emotions anywhere nearly as obviously as animals. Every person has a unique way of expressing their emotions. Sometimes, when people get sad, they get very quiet. However, people can also express sadness in a million other ways, such as crying, getting angry, smiling the pain away, acting like nothing is wrong, being passive aggressive, etc, etc. This goes for every emotion we can experience, and most emotions have reactions that overlap. For example, people can express anger the same ways sadness can be expressed. To be fair, I have my own unique ways of expressing emotion, mainly by not expressing it whatsoever until I'm in private. However, in private, I do cry when I'm sad, I get very irritable when I'm angry, I'll cower and shake when I'm afraid, etc, etc. But, in public, I typically just shut that all out and try not to show my emotions to others.
Besides emotions, we have the ability to communicate in many more ways than other animals. Most notably, we have these awesome little sounds we can make called words. Sadly, many people I've run into really suck at using these awesome little noises, and even get pissed at me whenever I try to explain something to them as I'd like it to be explained to me. Very thoroughly and clearly. But, apparently that's "patronizing" and "rude", and I'm the idiot for not understanding what people need when they don't use their words to explain it to me in detail, since I can't read minds (unlike the vast majority of the population apparently).
For years, my mom would tell me to "do the dishes", and then get upset when I did the dishes but didn't clean the whole kitchen. Or, my mom would ask me to clean the whole kitchen, then she'd return a little later and thank me for doing "extra" work instead of just doing the dishes.
