Hello there! I am happy to announce, that after more than ten years of self-doubt, suspicion and inability to get a proper assessment, I've decided to finally let go and accept myself as an autistic individual.
A bit of history
My first exposure to autism (or rather Asperger's syndrome) happened when I was 14, through a game called To the Moon. One of the characters in the game, River, is mentioned to have some kind of diagnosis at one point (through outside sources it was confirmed to be Asperger's syndrome), and playing the game, I couldn't help relating to her far more than to any other character. I'd say far more than to any other character in general, despite me being a guy and it probably being weird that I relate to an autistic lady.
I quickly found online questionnaire to self-diagnose Asperger's Syndrome, and got high score. I felt like it all just clicked, it seemed to explain many of my struggles, the feeling of being an alien and all that.
Then the doubts started. As I learned more about autism, as well as I could in that age (should probably mention, that I might also have dyslexia, or at least struggle to read, so I didn't research scientific materials properly), it started to appear that I do not fit 100%, despite generally feeling like I do. The thoughts that perhaps it's just me wanting some kind of attention started to consume me. In order to put all these doubts to rest, I started seeking a way to get a proper diagnosis.
I knew there was a department of psychology in our local university. So, on open doors day I went there and asked if they could assess me. The woman gave me a surprised glance and said "come in a couple of days". So I did, anxiously anticipating the moment of truth the whole time. When I came there next time, another woman came to me, and immediately said the following "No, I don't think you have Asperger's. It is a common experience to see conditions you read about in yourself, it happens a lot to medical students". It was a bit of a letdown, but I didn't argue. Now, years later, I realize that there were quite a few things wrong with her assessment:
- She was a psychologist in a university of foreign languages, not psychiatrist, and not even in a med school (that one was probably on me, since back then I didn't know the difference between psychology and psychiatry);
- She concluded that I don't have Asperger's from the first glance, she didn't ask me a single question;
- It might be just me, but isn't it kind of a telling sign that a 14 year old kid researches topics like Asperger's syndrome? I know something similar often happens to med students, but I never was a med student.
Nevertheless, that short interaction convinced me that I am probably fooling myself. Things that lead me to believe I was autistic in the first place didn't disappear, however, no matter how much I tried to convince myself that it's just my introversion, social awkwardness, and internal ableism that at times lead to self-loathing.
A few years later, out of curiosity, I've passed the autism test once again, and to my surprise, I still scored high. That started a loop of convincing myself that I was autistic, then brushing it off due to not being autistic enough, and some time later, passing another test. Usually my periods of "convincing myself" were me obsessively researching the topic, hardly thinking of anything else for extended periods of time.
I am in my late 20s now, and have passed countless tests over the years. I believe I might've passed every single test there is (I should probably mention that I did struggle understanding the questions, not because English isn't my first language, but because it's confusing. Only recently have I discovered that jumping over things probably doesn't mean literally jumping over things, like a rock or something. A year ago, still in doubts, I've decided to stop trying to understand questionable parts on my own and ask ChatGPT for clarifications, to make the test as accurate as possible, the results were the same though). Having a real life experience of moving away from my parents and working on quite a few jobs, retroactively opened my eyes on a log of my issues that I always brushed off as me being lazy or something. I realized, that I'm not actually lazy, and actually quite a hard worker. The problems with communication and mental distress that relations with my colleagues cause, are a huge problem that makes it nearly impossible for me to keep a job more than about 8 months, even if I actually like the job itself and my boss asking me to stay every time I announce my resignation. I've switched 8 jobs in a span of 2 years or so due to stress that would build up slowly over time with no way of relief. If anything, days off and vacations only made it worse due to the constant acknowledgment that I'll have to go back soon.
I've been unemployed due to a variety of outside and inside factors that I won't explain here. What's important, is that it allowed me to really look into myself and analyze my life more than ever before. I've spent a lot of time in this sub and in some other autistic communities, which allowed me to really see what autism really looks like, not in media, but in real life. And though there were a few points of disconnect that raise my doubts even now, I feel relatable to so many posts here, it's really ridiculous.
The only thing that kept me from proudly claiming that I am self-diagnosed and not just suspicious is the stigma both in society and in my mind against being self-diagnosed. But lovely people in this community, on YouTube and on Tumblr, along with some real research, have convinced me that self-diagnosis is nowhere near as invalid as it is claimed to be, especially in a case similar to mine, when you spend years boiling with the idea and still come back to it despite everything.
Sadly, my closed ones, including close friend, girlfriend and parents don't believe I'm actually autistic and claim I'm probably just too self-conscious or something. It stings a little, but I hope I can live with it. I must admit though, quite a few of my other friends, who known me for years and have at least some understanding of ASD (either because they know someone diagnosed or were curious themselves and dove into the topic) said that I am most certainly autistic.
This is where I stand now. I do want to get an official diagnosis, but due to reasons outside of my control, it is impossible at the moment and won't be possible for quite some time. Other than tests, I've discussed this topic with ChatGPT, giving it a comprehensive amount of data on me, even asked it to be critical, and it still said that there's strong possibility of me having ASD. I've also made my own chatbot on roleplay platform, that was supposed to assess me, and to my surprise, it actually did. That last one was more of a silly fun thing to do than anything else though.
Hope my life's journey in relation of autism wasn't too long and boring to read. Bellow I plan to add a categorized list of things and behaviors that were deemed weird by others, that either make me think I have autism or could be explained by me having autism. Feel free to skip this part, as I'm adding it more for the self-reference than anything else, and plan to update it in the future in case I notice something new.
Category A: Persistent Deficits in Social Communication and Interaction
1. Deficits in social-emotional reciprocity
- Difficulty engaging in conversations and connecting with people. I can communicate with one person, even though it's usually draining, but communicating with more than one person at a time, even if we are all good friends, usually turns into me becoming passive listener that tags along, due to inability to follow up and get into the conversation (often even if I try to get into the conversation, I am unheard due to my naturally quiet voice. Sometimes I almost scream to get into it, but it makes me feel awkward, so I generally don't do it).
- I struggle to understand jokes and sarcasm. Here are an example: a mother of my girlfriend was talking to her husband, who's only home on weekends. It was on Monday, she he just left. She asked him where's the beer that was in the fridge (there was a lot of beer), and he told her that it got spoiled, so he threw it away. My eyes were wide with shock, I didn't know beer can spoil. Out of all people there (my girlfriend, her mother and I), I was the only one who didn't understand it was a joke. My sincere shock caused a lot of laughter too.
- Long pauses during speech, due to me struggling to consistently come up with what to say next, even if I have a general outline in my head.
- History of relying on online interactions to connect socially but finding this increasingly impossible. Due to finding it hard to have a verbal conversation, I prefer text chatting, which if often much easier and so much more enjoyable.
- Awareness of being socially awkward and possibly avoiding social interactions due to fear or difficulty. During my teens I was a lonely kid and rarely experienced good social interactions. I did crave them, but concluded I probably need better friends for it to feel good (my school friends weren't the best ones to say the list and often contributed to me feeling lonely and isolated). I later realized that I am actually much more comfortable on my own, even if people around me supportive and all that. Any meaningful interaction is draining and though I don't mind it occasionally, I am okay with it much less often than my friends would like to.
2. Deficits in nonverbal communicative behaviors
- I am often perceived as emotionless, especially in childhood. Parents told me I usually had a neutral face expression and having me smile or laugh was a rare occasion.
- When I was a kid, people often told me that I speak in monotone voice, which added to that perception of me being emotionless.
- I believe I am better at it now, but one of my few IRL friends often jokingly calls me a bioroobt, I suspect for that exact reason.
3. Deficits in developing, maintaining, and understanding relationships
- This one mostly concerns my jobs. I could never find friendship, or even good relationship in any of the jobs I had. I could never really fit in into any group, be it school, university, or work environment, always being that weird kid with no friends. It was especially noticable in the university, where I only talked to a guy who was considered even more of an outsider than I am (I believe he had some significant issues, which made him look weird or even dangerous, but we got along alright actually). I don't think I was considered weird, but when this guy wasn't present, I was usually sitting alone, not talking to anyone, and didn't make a single friend during my time there.
Category B: Restricted, Repetitive Patterns of Behavior, Interests, or Activities
1. Stereotyped or repetitive motor movements, use of objects, or speech
- Sometimes, especially when I research something obsessively, I jerk my leg, without even noticing it. I've started noticing it in humorous situations lately, when I read about autism and it talks about stimming, only to realize I've been stimming in that exact moment.
- Sometimes, I feel the need to rub and pinch my eyelids and eyebrows. I used to do it a lot in school, some other kids even called me names for that. I don't know why I do that, it isn't pleasant, but if I stop in those moments I feel restless and even distressed a little.
- When I'm tired, I often close my left eye and look at the screen with only my right eye. It somehow makes it easier to focus.
- I've heard scripting might also fit here. When I worked in retail, I used to say "Thank you, come again please" to our customers when they bought something. But I also accidentally said that when I bought something in other places, instead of just "thank you". Other than that, I often feel an urge to quote different movies, memes and so on, even if it's probably not very appropriate (I taught my girlfriend on what Gachimuchi is, for her to better understand my references). Not sure if it's really a good point, but I'll leave it here for now.
- I only enjoy reading on Nintendo DS and from tiny books. I have a collection Shakespeare works in form of tiny books, roughly the size of PSP Go, or half the size of Nintendo DS. Not sure if it could be considered a stim, but I've decided to put it here just in case.
- Occasionally I like to hum a couple of notes, especially if I'm busy with something. It's not even close to a melody, it's just a couple of notes (if you played Demon Souls on PS3, you might remember in Prison of Hope, one of the prisoners was singing two notes over and over, my humming is similar to that, though I started doing it long before I ever had a chance to play Demon Souls)
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns
- This one isn't exactly clear to me yet, but now that I have a lot of free time, I realized that I can't do anything without a schedule. In the morning I practice Japanese, and if I miss my morning practice, I will struggle to do it during the whole day and won't get anything else done, feeling terrible about myself. It happens every time.
- When I'm absorbed in something (like now), it's hard to stop even for just a moment to go to the restroom. Not sure how severe it is, but I know that feeling when you're really on the brink and have to run, because you were putting it up for later for far too long.
- I generally like following the same pattern everyday and sameness doesn't really bother me all that much, unless I am forced to do something that causes me distress (like work or spend significant time interacting with people).
- I have a unique approach in engaging with stuff. For instance, music (which will be explained bellow), games, movies, books and so on. If I am interested in a new piece of media as part of a long-running franchise, I will always engage with earlier works first and build my way up title by title in chronological order. In school I got interested in Doctor Who, I watched the teaser trailer for the Day of the Doctor, which is 50 year anniversary special and thought it was the coolest thing ever. Despite being interested primarily in the modern Doctor Who (just for reference, the series was cancelled in the 80s and soft-rebooted in 2005), I've forbidden myself from watching it before I'm finished with classic series that was being released from early 60 in black and white, which I now realize a very weird thing to do for a 15 year old. Similarly, when I got interested in the Legend of Zelda, I didn't go straight to Ocarina of Time or Wind Waker, but started with the original, its sequel and Gameboy games. Same thing with Mario, Resident Evil, Silent Hill and so on. Similarly, I prefer watching original classical movies, before watching the remakes. For instance, I watched original Ocean's 11 when I was 12.
- Similarly to what I've described above, I prefer taking apart dishes and eating it separately. For instance, I have a drumstick, mushed potatoes and some salad on my plate: I will first eat mushed potatoes, then salad and then drumstick. I only noticed it and realized it might not be considered normal, when my girlfriend pointed it out to me.
3. Highly restricted, fixated interests that are abnormal in intensity or focus
This one was hard for me to figure out, as I never viewed my interests as "special interests", but with some help from ChatGPT, I think I found a few. These aren't just my hobbies, but things that I persistently enjoy doing over long periods of time, that I can talk about for hours and that generally give me positive emotions, even if they take away too much time that gets in a way of routines (like now with me skipping my Japanese to write this text (I've been writing it for 2 hours now)).
- Autism. As evident from this post, both from my life journey and the fact I wrote it at all in the way I wrote it. I find joy in discussing it, in researching it and all that.
- Gaming. I wasn't sure this qualifies as a special interest until I recalled my early childhood experience. I wasn't a very talkative kid, but if you wanted to talk to me about games, I could talk for hours, feeling deep joy. I still enjoy it and have a private collection of articles I wrote when I had something to say about games I've recently finished.
- Music. I always had an opinion that no one like music the way I like it. Almost all of the people I ever knew viewed music as a more of a pleasant background noise. Meanwhile I often find myself listening to music alone, without getting distracted. I can sometimes go into a YouTube rabbit hole of listening to old but great songs, which can often get in a way of my sleep. I also have a varied taste in music. Whenever I like a song or two from one author, I download their whole discography and listen to all of their albums one by one in order of release. I believe it's the only right way of experiencing music. More than a half of my hard drive is filled with music.
- Handhelds. I've decided to put it into a separate category from games, because it's not so much about games as about the devices itself. Lately I rarely play my Nintendo DS, but I use it to read books and find it amazing on its own, even without games. Different handhelds from the past fascinate me, be it Wonderswan, classic GameBoy, PSP, PS Vita, 3DS, or even not a gaming device at all, but a portable computer, both old and new (like GPD Pocket - my dream machine). I have a small collection of handheld devices and at one point had a real rarity in our parts: a LG enV2. The phone didn't work in our parts, but it was such a cool curiosity, I still used it as a tiny typewriter for short notes.
- ChatGPT also suggested strong engagement in specific communities like this one. I believe it should reinforce the idea of it being a special interest, though I'm not sure.
- I have some unusual sexual kinks and can talk about them for hours, even when removed from sexual context. I didn't think of adding it initially, but not too long ago, when discussing the possibility of me being an extrovert as opposed to introvert (I am and always was an introvert), she mentioned that I can talk for hours about topics that interest me, including this kink. So I realized it might be a special interest for me, actually. I enjoy discussing it both form kinky perspective, as well as philosophical and practical, and I'm not sure which I like most.
4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment
- Discomfort at certain sounds. It's not something severe, I don't think I've ever been overstimulated to the point of significant distress. But I don't like high-pitched noises. When my dogs are playing with whistling toys, I can't focus on studies. I never use whistle on kettle, and manually judge when it's boiling. I turn of microwave oven a second before it goes off. I can't focus on much of anything (aside from special interests mentioned above) if there's popular music playing in other room, or my girlfriend watches TikToks (loud enough for me to hear) or hums along to a song in her headphones (or even listens to a song loud enough for me to hear despite her wearing headphones) next to me. Though good headphones help with that.
- I either can't or feel deeply uncomfortable eating certain foods. My body rejects salt-cured pork fat (a common dish in Ukraine) in the most intolerant way, though everyone else seems to enjoy it. I can't tolerate zucchini or eggplants in any form, be it pickled, fried, boiled or any other way. Whenever I even try to put it in my mouth, it causes me to spit it out due to vomit convulsions. I am slightly more tolerant towards onions, but I still find them deeply uncomfortable and pick them out whenever I can. When I have a meal with lots of fried onions, I usually leave like half or a third of it, due to the amount of onions left there makes it impossible to take them out. When I was young, I would often get stuck with different dishes, sometimes poking it for an hour at least with a fork, forcing it into me, before gathering the courage to ask parents to not eat it.
- Temperature sensitivity. I am much worse at tolerating heat than anyone I know and it also makes it hard for me to sleep in summer.
- Smell sensitivity: certain food, chemical and even perfume smells make me deeply uncomfortable, close to making me vomit, causing me to hold my breath until I can get out of the smell cloud.
- I cannot tolerate anything on my skin. No creams, lipsticks, or anything else that you're supposed to hold for a long time, it makes me uncomfortable enough to endure dry skin and lips (which often causes small tears on my lips to appear) in winter.
- I cannot read anything, if there's a significant movement in the periphery of my vision. If there's a non-stop playing gif under a post, I either have to cover it with my hand or scroll it out of the screen, before I can read the post. Similarly, I stop mid-word when reading a book and there's some movement on the background.
- Certain types of fabric irritate my skin without causing rashes or anything like that, though it's rare and I'd say probably not all that significant, so I'm not sure if it's really related.
- I am hypersensitive to caffeine. If I drink a cup of coffee later than 3PM, I won't be able to sleep in next 12 hours at least.
- I don't like being drunk and generally don't understand the appeal of being drunk.
I thought of adding some tendencies that I find unique and might be explained by autism, but couldn't think in which category to put it, but decided to not, as there's a high chance of my quirks being irrelevant to ASD. It's probably important to note a few points that always made me think I probably don't have ASD though. Here they are:
- I never experienced a meltdown. At least I think I haven't. I was considered a crybaby in my early childhood, and parents later told me that even a stern look at me could easily make me cry. But when I've read of experiences of other autistic adults with meltdowns, it seems so much more severe than anything I've ever experienced. I think, the only time I've experienced something similar is when overwhelmed by emotions: a death of loved one (caused me to cry most of the day for a month or two), a breakup (when I tried to breakup with my girlfriend, it caused me to cry to the point where it was hard to talk) and so on. It's hard to tell if that's it, since I don't fully understand what meltdown actually means (English is not my first language and though I am really good at it, I might be not good enough for that), and definitions don't help either. Somehow, when discussing meltdowns everyone here, in autistic community, seems to just understand what it means.
- Similarly, I don't think I've ever experienced shutdowns. I understand shutdowns as periods of muteness, inability to do much of anything and so on. I'm not sure if it's actually it. The closest thing I've felt is low energy periods. I could still talk, could still do the chores, but struggled to follow my routine even, and wanted to not think of anything hard. When I notice such period, I would usually play games or something, feeling bad for not following my usual routine of learning.
- I don't recall struggling with eye contact. When I'm conscious about it, I can look the person I'm talking to in the eyes. But only when they are talking, for some reason when I'm talking, I can't focus on looking them in the eye, instead looking elsewhere. I vividly remember my parents asking me to look them in the eye and me, not understanding how to look at both eyes simultaneously (I now can do it, by the way), looked between the eyes instead. When I worked in a small phone shop, I noted quite a few instances, when a person would come to the store, I saw them in the corner of my eyes, we started talking, discussed something, and only then I looked at their faces, realizing it took me so long to do it. So I might have some problems with I contact, but I don't think it qualifies.
If you've come this far, thank you for your time! If you have any thoughts, any at all, please leave a comment. Do you think some things I've described are irrelevant? Have thoughts on meltdowns, shutdowns and eye-contact? Please, share them!