Category: Japan

15: Diagnosis & Coming Out

If you haven’t already, please read my blog post 13: The Autistics Left Behind to better understand this post!

Welp, here it is!

Today is the day that I share my news with friends and family via Facebook. I was originally going to share my blog with everyone on Friday, but I’m too anxious to wait another day. *paces nervously*

One major reason I started this blog was to have a vehicle to come out to people about being diagnosed as Autistic. Masking my Autism has become so incredibly tiring and I’m really burnt out. I also feel like I’m hiding such a huge part of myself from the people I care about! (See: 6: Why I’m Writing This Blog for more on that.) I’ve been feeling pretty lonely and isolated lately and I want that to end.

So here we are. The story of how I got diagnosed.

Evaluation in Japan


I started my journey by accident in 2015.

I was working in Japan and seeing a Japanese psychologist (who’s fluent in English) for help with the grieving process after losing several people close to me. I’ll call my therapist “S” here for the sake of privacy.

Throughout the years I had sometimes wondered if I might be Autistic, but would pretty quickly decide that it must be impossible–I didn’t fulfill this criteria or exhibit that trait, etc. But I eventually stumbled upon some resources about how women and non-binary on the Spectrum often present very differently than men. (See 13: The Autistics Left Behind for more info on that.)

After delving into research about Autistic women, I tentatively started to let myself consider that I might really be on the Spectrum. I began to take some notes about my life and the way I experience the world as I continued to research about Autistic women. (The baby drafts of this blog!!)

I figured that someday–if I decided to be formally assessed back in the US–I would have all that stuff written down already. 

But I didn’t bring it up to my therapist. I was too afraid that she wouldn’t know about women presenting differently and about masking. I was terrified she would immediately shoot me down without assessing me. (It’s not that I was set on being diagnosed as Autistic. I was set on being assessed accurately and thoroughly–whatever the result.)

So I continued to quietly gather information and write down my self-reflections without telling anyone. It was an isolating, but adrenaline-filled time.

It wasn’t until 2016 when I had been seeing S for a full year that things changed. My family had come to visit me in Japan and I showed them around several cities throughout the country, acting as both guide and interpreter. When we were in Tokyo, I experienced an intense bout of sensory overload that led to a subsequent meltdown. (You can read about it in 5: Sensory Overload & Control.)

When I returned from the trip and S asked how it had been, I finally told her. I told her about the sensory issues I’d been having more and more difficulty with, the meltdown in Tokyo, the social fatigue, the wondering, the doubting, the researching–everything. Our session ran over time as she patiently listened to everything spill out. Then I waited as she thought and chose her words carefully.

To my surprise, S had been wondering if I was on the Spectrum as well.

I was really taken aback. I sort of sat there in shock for a moment before a huge smile crept over my face. “Really??” I exclaimed, euphoria rushing over me. I was just so relieved that she was taking me seriously.

I printed out the notes I had been writing on my life and handed them over to her during our next session with an anxious excitement. When she returned the pages the following meeting, we talked them over in more detail and she agreed again that she suspected I was on the Spectrum. She asked me to continue writing and agreed that it would be useful if I chose to seek formal diagnosis someday back in the US.

Over the course of the next year, I wrote feverishly. I couldn’t stop. I literally couldn’t stop scribbling insights and realizations onto whatever surface was available. So many things started to make sense about my life and I felt such a sense of relief come over me.

But I still wondered. I went back and forth between good days when I felt more “normal” and questioned myself, and bad days when the truth was presented and reaffirmed right before my eyes through a meltdown or extreme social misstep. I bounced back and forth between denial and acceptance.

Finally, as my time in Japan came to an end, S presented me with a referral letter. At this point, she had seen me in regular sessions for two years, read up on recent research about Autistic women published in psychology journals, and read all of my writing.

On July 10, 2017, she handed me a letter which contained the lines:

“While I have seen Alex, [they have] shown similar characteristics to Asperger Syndrome and Autism, such as sensitivities to various stimuli, panic attack due to sensory overload, fatigue after social interaction, and need to follow schedule rigidly.”

She went on to write that she believed me to be on the Spectrum and was referring me for formal assessment and diagnosis.

That letter was such a gift. I knew that with it, I wouldn’t have to start over completely when seeking diagnosis. I knew I’d have someone in my court (so to speak) and wouldn’t feel like I was going into an assessment completely un-supported.

Assessment and Diagnosis in the US


I began seeing my psychotherapist, M, soon after I returned to the US to get some help adjusting to life back in the US and to address a possible eating disorder. (I will address my eating disorder in a future post.)

After a few sessions, I felt comfortable enough with M to bring up Autism and I gave her the letter from S. She said that she would evaluate me over time as she got to know me, so we continued our sessions and left Autism on the back burner.

By late November of 2017, I wasn’t writing my book anymore. Not for months. I felt like I had stagnated in my self-exploration and realization. After digging deeper, I realized that I was once again doubting if I was actually on the Spectrum.

I brought it up to M and we explored why I was feeling this way. During that session, we realized that–after the initial deluge of self-realization and discovery–I had adapted and started doing things in ways that minimized meltdowns and sensory overload. I wasn’t “less Autistic,” just coping with things better and going through a time when my traits weren’t as noticeable–even to myself.

Next session, she brought in the DM-5 (The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition) and we sat down and went over the diagnosis criteria.

By the end of the session, I had my final, irrefutable proof.  I am Autistic.

I was expecting my road to diagnosis to be an excessively difficult, expensive, humiliating, and stressful process. I know that for many woman, it can be.

I’ve been very lucky. This has instead been a journey of good luck, strange happenstance, and unexpectedly compassionate therapists. 

After diagnosis, I’ve been hit with so many unexpected emotions:  fear, sadness, excitement, regret, doubt, rage, determination, grief, elation… It’s been an ongoing, never-ending process as I come to terms with who I am.

I feel a sense of grief and loss that I wasn’t diagnosed sooner, but also an odd and bizarre relief that I wasn’t. I feel excited that I finally understand myself. I feel fear for the future and uncertainty as I wonder what the future holds. I feel an internal struggle as I decide what my new boundaries and limits are, and how many of those are worth pushing and how often.

Recently, my overwhelming feelings are isolation and insincerity. More than any of the other emotions, these are ones I can’t bear anymore.

As I share this blog, I feel utterly vulnerable and more than a little terrified. But I also feel excited. I feel free. There’s a freedom that comes with realizing that I can’t control how people react to my coming out. I can’t control it, so why worry about it?

No matter the reactions of those I care about, this is a truth that needs to be shared. It’s time for me to come forward and say, “I am Alex. I am Autistic. I am me.”

7: Japan—My Autistic Haven

I first went to Japan when I was 12 years old for a two week study abroad trip through my middle school. I loved it and continued to study Japanese culture when I returned to the US. I chose my university for its famous Japanese Language and East Asian Studies programs, participated in a month-long field study in Tokyo and Kyoto, spent my junior year at Kansai Gaidai University in Hirakata City, graduated with Japanese and East Asian majors, and finally worked in Japan for three years as an Assistant Language Teacher (ALT). Japan is one of my special interests!

There are so many reasons why I keep gravitating toward studying about, living and working in, and obsessing about Japan!

  1. The Japanese language–hierarchy: A large part of the Japanese language is made up of set rules and patterns based on who you are talking to. If you know your place in the hierarchy, you know how to talk to basically anyone. Don’t know if you are above or below someone in hierarchy? Just use the general polite form of language! It takes away so much guess work.
  2. The Japanese language–set phrases and ritual: There are many instances in Japanese when a formal, ritualized, or set phrase is used and you know exactly what you’re expected to say in return. There is no guess work or fumbling for a response. You just know exactly what to say without thought. For example, when entering or leaving a home or work environment, there are set phrases you say and set phrases others will respond with. When you say these phrases, you know exactly what the response will be (and vice versa) and that’s incredibly comforting.
  3. There are more clear social and cultural rules: It really helps that I’ve studied Japanese culture for years both on my own, while in Japan, and at university. It may have been different for me if I had grown up in Japan, but being able to study about a society has made some aspects of fitting in much easier.
  4. Being a foreigner: Being a foreigner in Japan affords great privileges and allowances socially. In a lot of instances, any effort made as a foreigner is an unexpected surprise which is praised. Efforts to behave culturally appropriately in Japan will be often be met with exclamations of surprise and delight while social missteps are more often seen as an unfortunate byproduct of being foreign.
  5. If I don’t pass as Neurotypical, no one suspects: Along the same lines, it’s much more likely that someone would assume my quirkiness or awkwardness is due to being a foreigner! Any social misstep or awkwardness is almost always attributed to just being a foreigner and coming from a different culture.
  6. Eye contact is not nearly as valued: Prolonged eye contact can actually be seen as very rude in Japan! Along with this, handshakes and hugs are not the norm, so it’s much more sensory friendly. People bow to one another and there are even rules about how low to bow depending on your hierarchical status.
  7. Less perfume/cologne bathers: People in general just don’t overdo wearing scents. That’s not to say that some people don’t, but–compared to the US–they are few and far between. This means a much more friendly sensory environment for me and less sensory overload.

When I am in Japan, I know more-or-less what is expected of me and what to expect from others. When in America? All bets are off. That’s not to say that everything in Japan is completely wonderful for me and everything in America is terrible. But I certainly have a lot less social anxiety in Japan and it tends to be more sensory friendly.