Presenting: my complete diagnosis story.

I’m approaching six months since my diagnosis, and I figure sooner-rather-than-later is better to record my experience leading up to, and getting diagnosed Autistic. This one’s going to be lighter on the introspection, but hopefully by recording the entire process I can create a helpful resource for the future. So, without further ado, here’s the whole shebang…

The beginning

In the late ‘90s, I was born in a hospital in- Just kidding. However, I do want to emphasize that if one were to truly start at the beginning of their Autism story, it would start at birth because we are Autistic at birth. To truly give the whole story would see me describing all the various points in my life that now, with hindsight, hint at my Autistic identity. But, I don’t feel like going into such detail or spending the exhaustive amount of time that would require, so I’ll skip ahead 20-something years…

The (much later) beginning

In March 2022, I received an email containing the date of my departure to Japan. It signified the end of a very long two-year stint in limbo: I had been trying to move to Japan for a while, but when COVID hit, Japan barred entry to foreigners for an indefinite period of time. While I had accepted a job offer in Japan, I was unable to actually enter the country until the Japanese government allowed it. For the longest time, no one had any idea when Japan would reopen. It was hell. The “unknown” was the worst part. I had no idea if I could move to Japan in the next month, let alone in the next year, let alone in the next five years. I occasionally received updates from the Japanese consulate that was always some form of: “We have no idea when you will be able to depart. Please be patient.”

But at last, my departure date had arrived. Limbo was no more! In one month, I had to say my goodbyes, pack up my things (in no more than two suitcases and a carry-on), and dispose of whatever I couldn’t or wouldn’t bring with me to Japan.

One Sunday morning in April, I boarded a rather empty Boeing 787 and strapped-in for a long 14-hour flight. One grueling flight—my seat was broken and could not recline—later, I was finally starting my life in Japan.

It was quite stressful at first, but I suppose that’s to be expected when one moves to the opposite side of the world. There’s the usual stressors of moving—setting up utilities, filling out various legal paperwork—along with culture shock, a new job, a new country, and so on.

Surprisingly, I did pretty well on the social-side of things. I had little difficulty chatting up other foreigners coming to Japan with me, and had formed a decent friend group in just a couple of days. For one reason or another, most of the relationships I had established fell apart within the year, though.

Eventually, I would come to recognize a pattern in my life: I entered high school with a bang, going to a new school in which I knew no-one, but made a solid group of friends in my first year. Then, it all went to shit. It was a similar story in university, and now Japan. Is there something off-putting about me?

One exception to this was Ruth.¹ Ruth and I had arrived in Japan at the same time and lived five minutes away from one another. Because of our proximity, we helped each other with life in Japan, and grabbed dinner together at least once a week. We regularly exchanged stories of culture shock and strange encounters from the Japanese schools we taught at.

In December, I visited my family back in America for the winter holiday. On the return trip, Ruth and I had planned a weekend stay in Tokyo. We were to visit some art exhibits and restaurants on the first day, and Tokyo Disneyland on the second. I had the entire stay planned out meticulously, ensuring there would be enough time to enjoy each activity and a comfortable amount of time to travel from location to location. It was going to be a nice, enjoyable weekend before we had to get back to our day-to-day routines.

Everything went wrong. The Yamanote Line was out of order for the weekend, all the art exhibits we’d planned on ran out of tickets, and so did Tokyo Disneyland.² Every single thing we had planned on, save for a dinner reservation, was a bust. It was a fucking disaster. I was frustrated, but I did my best to improvise, determined to still have fun despite the circumstances. Avatar: The Way of Water had recently released, so I took Ruth to my favorite IMAX theatre in Tokyo. Twenty minutes in, the audio started skipping and eventually completely cut out. The theatre lights were raised, and an employee sheepishly made their way to the center of the theatre, looking minuscule in the massive IMAX auditorium. They profusely apologized in the most polite manner possible, then informed all us moviegoers that the showing was cancelled. Ruth and I cut our losses and ended our weekend stay early.

The impetus

In the weeks following, Ruth and I didn’t speak much. We didn’t meet for dinner like we normally did, but I didn’t think much of it. I assumed she was busy with the new semester.

Then, I got a message from Ruth stating she had something she wanted to discuss, but she wanted to make sure I was in the “right headspace” for it. Immediately, alarm bells started ringing in my head and my anxiety went through the roof. I racked my brain, trying to think of what I possibly could’ve done wrong, but I couldn’t think of anything. I messaged her back, saying I was good to talk whenever. I attempted to play it cool, but in reality I was the farthest thing from relaxed.

We met at a Starbucks. It was pretty late; completely dark outside. Ruth arrived ahead of me and had already seated herself at a table, looking imposing like an upset principal. I grabbed a coffee and sat down across from her, offering a meek greeting. I skipped the small-talk and asked what she wanted to discuss. I just wanted to get it over with. I knew the only hope of recovering from the intense anxiety I had been feeling was by getting through whatever this conversation was.

Even now—over a year later—as I write this, I feel anxiety just thinking about this situation.

Ruth’s hand slipped into her jacket pocket and produced her phone. Her screen was slightly angled toward me, and I could just barely make out her Notes app open to a long list of bullet points. Oh, shit.

Ruth explained that she was extremely unhappy with how I handled our stay in Tokyo, and she left feeling like she had wasted a bunch of money. As she had been thinking about the trip over the weeks prior, she recognized similar behaviors of mine preceding the Tokyo trip that she took issue with. Then, she went through her list of bullet points, each of which was a specific behavior of mine or instance in which I had acted in a way that she deemed unacceptable.

Much of the details escape me, but I remember how I felt: my mind was racing, my vision was blurry, there was a tightness in my chest, my hands were trembling, it was difficult to breathe, and difficult to speak. In a word, I felt like hot garbage. Well, in two words…

Eventually, she finished. I thanked her—why would I thank her?—for being honest with me, said I would work on it, and went home. I wanted to throw up.

That conversation effectively marked the end of our friendship. After the Starbucks meeting, we hung out maybe two or three more times before Ruth left Japan several months later. After her departure, I felt nothing but relief.

Who’s right or wrong here is beside the point, but I don’t think the blame falls solely on one side or the other. Obviously, there were things I had done that Ruth wasn’t cool with, but the way she went about broaching that subject was…less than ideal. In reflection spurred by her listing off my sins, I realized that I was putting a lot more into our friendship than I was getting out of it. Our parting of ways was ultimately mutual.³

The aftermath

In the months that followed the Starbucks confrontation, my self-image was the lowest it had been in many years. I distinctly remember having to take a group picture a month or two after the fact. Naturally, I was expected to smile because that’s what one does in a picture, right? They smile. No one wants to preserve a sad memory! So, I smiled, but the disconnect between my outward appearance and my internal state was horribly painful. Throughout the photoshoot, all I could think about was how badly I wanted to go home and kill myself.

I’ve only been that low once before. It’s not a good place to be, and the moment I was able to recognize the danger I was in, I started therapy. It didn’t come from a place of fear—death has never scared me. Rather, it was an effort to try to make this “life” thing work. It would be preferable to find a way to enjoy life while I’ve got it, but I was getting really tired.

I found a therapist and met with them every week for six months or so. At no point did I ever feel like I was making progress, but I also didn’t know what “progress” even looked like. I figured my therapist knew what they were doing. I assumed they had a plan in mind. They’re a professional!

At the same time, I started using TikTok. I had no particular reason for doing so. I was simply bored, I suppose. Initially, I was served the usual dance and lip sync content, which I had zero interest in. Soon enough, the algorithm started to catch on that I like cats. My feed became an endless stream of cat videos, but now and then TikTok would slip in a video or two related to mental health. At first, they were pretty broad: a video about depression, one about anxiety. Relatable, sure. Over time, they began to get more specific, eventually serving me videos of Autistic people. I thought nothing of it, but I found the videos interesting because the Autism being described in the videos was quite a bit different from the Autism I had heard about growing up.

Life continued on like this for a while: go to work, think about killing myself, come home, watch cute cats on TikTok interspersed with oddly resonating videos about Autism; see my therapist every Wednesday. After a couple of months of TikTok continuing to serve me Autism content, I began to wonder if it knew something I didn’t. I asked my therapist if it was possible that I am Autistic. They laughed, and assured me that wasn’t the case. I felt conflicted: On one hand, I was frustrated because it didn’t feel like my therapist took my concern seriously. On the other hand, I felt a little more at ease because I wasn’t comfortable with the idea that I could be Autistic. Growing up, Autism was something to be made fun of. It was only slightly better than being gay, and as someone who grew up in the Bible Belt, that isn’t saying much.

Late 2023, I got an email informing me the fees for my therapy would be increased, meaning I could no longer afford therapy. After my (rather abrupt) last session, I was left uncertain of what, if any, progress I’d made. I was confused, mostly: I felt like I understood myself even less than when I began therapy. On the upside, I wasn’t feeling attracted to the idea of suicide so heavily. That was something, I suppose.

Self-diagnosis

It had been about four months since my therapist had stated they didn’t think I was Autistic, but TikTok was still showing me Autism-related content and my suspicions that I could be Autistic had only grown greater. I was aware that I could be experiencing confirmation bias or something similar, but I thought it was at least worth some investigation. I had been hearing a lot about Dr. Devon Price’s Unmasking Autism, so I loaded the book on my iPad and got to reading.

I have had quite a bit of trouble reading since becoming an adult. My mind tends to wander: I will read the words in my head, but I’ll be thinking about something else all the while, so I often have to go back and reread paragraphs or sometimes entire pages. It isn’t unusual for me to read for an hour, and realize I can’t actually recall a single thing I supposedly read in that time. But with Unmasking Autism, this wasn’t an issue. In just a couple of days, I finished the book, its pages adorned with a myriad of various colored highlights. What had been a suspicion of Autism, was now near-certainty. Reading through Dr. Price’s words felt akin to reading my own biography. I had no idea it was even possible for words to resonate as deeply as Dr. Price’s.

I was now firmly in the self-diagnosis stage, although I didn’t feel comfortable stating to anyone that I am Autistic. Self-diagnosis is extremely valid—for a whole host of reasons—but I didn’t fully trust my own conclusion. Even if I was 99% confident I am Autistic, that 1% would forever haunt me.

Not sure what my next step should be, I started looking around online for other Autistic people’s stories about their diagnosis processes. In my research, I came across the excellent YouTube channel I’m Autistic, Now What?, which conveniently had a video titled, “So you think you might be Autistic…Now What?” It was perfect: a nicely structured guide that went step-by-step through the diagnosis or self-diagnosis process. I started by taking some tests Meg (the host of I’m Autistic, Now What?) mentioned and was shocked to see my scores: they didn’t slightly indicate Autism, they strongly suggested it. Still wary of confirmation bias or the like, I recorded my scores and planned to take the tests again a month later, to see how they compared. My theory was if my scores from a month apart were comparable, then I could be pretty confident the tests (and my answers) were accurate.

In the meantime, I began listing all my various Autistic traits according to the DSM-5 in a note on my phone. Whether it clearly fit the DSM-5 criteria or not, I included it: detailing my general awkwardness in social situations, my monitoring of others’ facial expressions, uncertainty of my emotions, stimming habits, and so on. I had a dizzying array of potential Autistic traits that somehow felt comprehensive, while also barely scratching the surface.

However, like the test scores, I doubted this list of traits, too. Maybe all the constant research on Autism was causing me to see things or patterns that were not reality. To test this, I decided to talk to those who were close to me.

I spoke to my two closest friends. I told them that I suspected I am Autistic, and I wanted to know if they had noticed any pertinent traits in me. Of course, I didn’t expect them to actually understand Autism, so I asked about specific behaviors. These conversations were rather inconclusive, but no one outright laughed at my proposal, which was a welcome change in light of the reaction from my therapist months prior.

Next were my parents. They seemed like the most important people to speak to, since they were present for my entire life. However, I was extremely nervous of how they might receive me suspecting I am Autistic. I decided not to mention it and just ask my questions. I set up a FaceTime, and asked things like, “Do you recall me making any unusual or repetitive movements?” or “Did you notice anything in my behavior that might’ve indicated a sensitivity to sound?”

Admittedly, asking strange questions like these out of the blue is not a good way to go about maintaining secrecy. It didn’t take long before my parents asked, “What is this all about?” Still incredibly nervous, but feeling like I owed them an explanation, I explained: “I…think I’m Autistic.” To my surprise and great relief, they received the news well, acting not with negativity but genuine intrigue. I went through the list of my Autistic traits and got their opinion on it. I learned some things I hadn’t known, and they learned some things they had never noticed.

A few days later, I considered everyone’s reactions to my suspicions. They were all a little different, but each reaction lacked one thing: surprise. Wait a minute, why is no one surprised at the possibility that I could be Autistic?!

---

A month of continued Autism research passed, and it was time to retake the Autism screening tests. I did so, and was shocked to find my scores falling within just a few points of my previous scores. I couldn’t deny it any longer: There was no way that the near-constant consumption of Autism content over the past year that resonated so deeply wasn’t a sign. There was no way that my scores that were so firmly in the Autism range indicated nothing. There was no way that my long list of possible Autistic traits was a red herring. There was no way that my friends’ and parents’ openness toward the possibility of me being Autistic wasn’t significant. I was Autistic. There was far too much evidence for it to be a coincidence.

Only one avenue of fact-checking remained: a professional opinion.

The evaluation

Unfortunately, getting diagnosed Autistic is a notoriously difficult process, especially if one is an adult. Living in Japan didn’t make things any easier for me, either. While my Japanese ability was enough to get me through daily life without too much trouble, it was far from sufficient for an Autism evaluation. This limited my options heavily. I did find a clinic in Tokyo that could do Autism evaluations for adults in English, but it was going to be pricey. After some time, I settled on a clinic stationed in America that performed online evaluations and fit the budget.

Before the actual evaluation, I had to fill out a screening form. It asked various questions like: “Why are you seeking an ASD evaluation?” and “Please share anything relevant that you think will help with our meeting.” I was also instructed to take the Autism Spectrum Quotient (AQ) and submit my score. For reference, I scored a 38.

The day of my evaluation eventually arrived. Because the clinic was in America, the meeting time was quite late for me: 10:00 p.m. and scheduled to take two hours. Naturally, my day was a wash, as I couldn’t be productive when such an important meeting was scheduled that day, even if it was occurring at the very end of it. I felt a bit anxious throughout the day, and tried to distract myself with video games, but it was mostly futile. My brain refused to focus on anything but the upcoming evaluation.

Soon enough, the clock struck 10, and the appointment began. The doctor began with an interview. He asked about social difficulties, sensory difficulties, and repetitive behaviors (stimming). I had my list of traits open and went down the list, reciting everything I thought might be relevant. I recall feeling rushed because I did not get to finish listing off all the traits I had on my list. This was stressful, and I worried that I wouldn’t receive a fair assessment.

Next, the doctor sent me a link to several evaluation tests. The tests were hosted on the clinic’s website, and sometimes had added explanations for some questions, which was greatly appreciated.

First, I took the Monotropism Questionnaire (MQ) with the doctor. I read aloud each question and explained my reasoning for each answer. I felt very self-conscious throughout: Am I talking too much? Does what I’m saying even make any sense? Am I overthinking these questions? When answering a question pertaining to special interests, I mentioned my main interest in video games. The doctor questioned me about this, so I began explaining how I log the games I play and organize them into various lists, my argument for games as an art form, and how games are an incredibly unique storytelling medium.⁴ It felt like something clicked in the doctor’s brain. They exclaimed, “Well, you didn’t tell me that in the interview!” We chatted about games for a while.

After finishing the MQ together, I was instructed to take four more tests by myself. I recorded my scores, then was given a short break.

For reference, here are the scores I produced in the evaluation:

• MQ: 207/235

• RAADS-R: 184/240

• Aspie Quiz: 158/200

• CAT-Q: 154

• EQ: 18/80

Getting a low score on the “Empathy Quotient” feels terrible, by the way.

During the break, I made a tea and reflected on my experience thus far. I was concerned I had been presenting myself as too “normal” throughout the evaluation. As soon as the Zoom call had begun, I immediately started masking. I always get extremely nervous around doctors, so there was no hope of switching off my mask. However, our chat about my special interest in games put me at ease, and I knew my scores were well-within the Autistic range. I was relieved there was clear evidence that pointed toward my own conclusion that I am Autistic.

We reconvened, and I shared my scores with the doctor. Then: silence, broken by the occasional clacking of a keyboard. After a time, the doctor said very matter-of-factly, “Well Sage, the numbers don’t lie. You’re Autistic.”

In the final 10 or 15 minutes of the evaluation, the doctor talked a bit about what a diagnosis meant and sent me some resources to look at later. Afterward, I received an email containing a letter signed by the doctor stating I met the criteria for Autism.

Post-diagnosis

I wasn’t exactly sure what to expect following a diagnosis. I had heard from other Autistic people online that there is very little support after the fact. The actual usefulness of an Autism diagnosis is questionable, anyhow. There is no treatment for Autism. One doesn’t need a diagnosis for any particular reason, unless one desires to apply for disability accommodations. I had, quite literally, been handed an Autism diagnosis and told, “Best of luck!” It was simultaneously one of the most impactful and most underwhelming events of my life.

Ultimately, I got what I wanted out of it: a professional opinion concurring with my own conclusion that I am Autistic. Was it worth the money required to get that professional opinion? Well…

I shared my evaluation’s results with those I previously interviewed about my Autistic traits. Reactions ranged from vague interest to questions about what a diagnosis actually meant, which I didn’t have a good answer for at the time. I’ve had occasional conversations about Autism since then, but things have largely returned to the status quo.

---

Knowledge of one’s status as Autistic affords them a great deal of insight about themselves and—particularly among those late-diagnosed—their experiences. The fallout with Ruth was confusing at the time; the Starbucks confrontation felt so sudden. I hadn’t seen any indication that I had ever done anything to upset her. Through the lens of Autism, things start to become more clear. Many of the behaviors Ruth had described in her confrontation were Autistic behaviors. That’s not to say she was wrong in taking issue with those behaviors, though. I do not view being Autistic as a free pass to act however one dictates. If there’s something I say or do that makes someone uncomfortable, I want to know, even if it is related to Autism. If there isn’t anything I can do about it, I can at least try to explain where I’m coming from.

It’s entirely likely Ruth had tried to express her discontent prior to the meeting at Starbucks, but I failed to pick up on it. It’s also entirely likely there were many of my behaviors that were perceived by Ruth as rude or of ill-intent, when in reality that wasn’t the case at all. Neither of us were aware that I am Autistic, so I don’t think anyone is really to blame.

The same cannot be said for another friend of mine, Lucas.⁵ Lucas and I were friends for over a decade, and they were one of those I initially discussed my suspicions of Autism with. They were hesitant toward the idea of me as Autistic, stating I didn’t fit the profile. I expected such a reaction. I, too, had been quite ignorant of what Autism actually is until fairly recently. Lucas made reference to those with Asperger’s, and I explained that Asperger’s is not a term that is used anymore, even being considered offensive in many cases. Lucas didn’t seem to be interested in this. When I visited them during a stay in America later that year, they mentioned off-hand that they suspected a family member of having Asperger’s because of behavior Lucas disapproved of.

“They must have Asperger’s or something!”

A short while after my diagnosis, Lucas and I caught up over text messages. I learned they were getting married later that year (exciting!), and I shared my diagnosis with them. We began discussing my future: whether I was planning to stay in Japan for another year. Suddenly, the conversation’s tone shifted. Lucas seemed very upset, began to criticize my choice to move to Japan, and offered (unsolicited) “advice” on what I should do with my life.

I was extremely confused. I stated that I didn’t understand what I had done to upset them, and asked them multiple times to explain, so I could make it right. They refused and only grew more angry. Finally, I cut contact with them. I still have no idea what happened.

I had heard from multiple sources that it was a common experience among Autistics to lose friends post-diagnosis. I’m not saying my friendship with Lucas ended because of my Autism diagnosis, but I’m not not saying it ended because of my diagnosis, either.

I share this not to shame Lucas—I genuinely wish them the best, even if I am left hurt and confused—but to show the wide range of experiences one is prone to have following an Autism diagnosis. Getting diagnosed provided clarity and a certain degree of stability, but it also brought with it newfound trauma to unpack and a whole host of other fun additions.

Either way, I view my diagnosis as inevitable. Moving to Japan and living on my own without any support network has been extremely trying. I’ve watched the life I envisioned for myself in Japan slowly fade away and become an impossibility for reasons that I can now recognize as linked to my status as a disabled Autistic person. It’s what it is. These are the cards I’ve been dealt. Ignorance can be bliss, but not in this case. Autism was always present; being aware of its presence allows me to act and plan accordingly.

So, what now? I’ve always been very introspective and enjoy discussing topics in-depth that no one else seems interested in. After my diagnosis, I found a strong desire to discuss my Autism-related experiences at length, with nowhere to voice those discussions. Bored at work one day, I started writing for what eventually became catloaf & coffee. The rest, well, can be observed right here, on this blog.

After I broke the news of my diagnosis to my parents, my dad asked me what Autism means for me in a broad, big picture sense. I replied, “Well, that’s something that I’ll be processing for the rest of my life.”

For me, diagnosis raised more questions than answers. On the flip-side, now I know what questions to ask, no longer left to fumble around aimlessly in the dark. I’ve still got a long road ahead of me, but I can take solace in knowing that limbo is over, at last.

---