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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.”

14: Fibromyalgia & Chronic Fatigue

Fibromyalgia and the associated chronic fatigue are also things I am passionate about talking and writing about more publicly. They are invisible disabilities that I deal with every day. Fibromyalgia puts significant strain on my pillars and I have to be very careful to take care of myself and manage my pain so that I can function.

Last year I participated in an event called “Keep Talking: a Storytelling Event” where I shared the story of my diagnosis. It was a really nerve-wracking experience to get up on stage in front of a crowd and be so vulnerable. But it was so rewarding and cathartic too!

In future, I’d love to talk about my Autistic journey on stage!

Below is the YouTube video (audio only) of my performance.

Note: I typed out closed captions to make the video more accessible. Please click on the CC button to turn them on. I’m also including the written transcript below for those who prefer reading it or use text-to-speech programs.

I am in pain. Every second of every day. I am in pain. Sometimes it’s a dull ache at the back of my mind. Other times it’s a throbbing, stabbing agony that keeps me bedridden. And I’m always exhausted. Next year will be the 10th anniversary of my official diagnosis, and I have literally forgotten what being energetic feels like.

It started in seventh grade. Sometimes I’d experience a random shooting pain in my leg. Had I somehow twisted an ankle during recess? But the pain would come and go, so I ignored it. Just growing pains. Nothing to see here. Nothing to worry about….

Going into the 8th grade, I started feeling generally unwell. I’d have an intense stomachache, a pain here or there, a crippling headache.… I started going to the school nurse more often than she deemed “normal.” I’ll never forget when she finally turned to me, sighed in frustration, and asked, “Have you been diagnosed with anything mentally wrong with you?” I’ll never forget, because that’s when I started to wonder myself. “I must be a hypochondriac. I’m just looking for attention. I’m just making it up. It’s in my head.” I started to ignore it. To stop mentioning it. To pretend it just wasn’t there.

I joined color guard in high school and I absolutely loved it! But toward the end of my second season I was having wrist and shoulder pain too severe to continue. I joined the choir, but struggled to stand through performances. I began to feel exhausted. I went to the choir director’s office to rest during free periods. Pretty soon I started seeing a chiropractor for back pain. It felt like I was hanging on by a thread. But I got through it and I graduated!

The first semester of college, I got the flu. A bad flu—one that sent me to the ER. And I just never really got better. Imagine your worst flu. Now imagine it doesn’t end. It doesn’t go away. No Tamiflu. No bouncing back. My body ached. Those pains I’d been feeling for years intensified. They’d now shoot up and down my body like fire and lightning mixed into pure hell. I felt nauseous all the time. I was beyond exhausted. This was a new realm of agony.

I began missing classes when the pain in my legs and back was so bad I was unable to stand. I started getting “medical escort” rides to class from campus security. I’d sit in the back of their patrol cars, literally locked in—with a metal grate between me and the driver—and they would drive me to my classes, glancing at me in the rearview mirror. I’d feel embarrassed because I was this outwardly healthy-looking college brat they were ferrying to class. I’d hobble into the building where I’d often be late to class because the football team would inevitably be using the elevators… In class, I’d sometimes have to lie on the floor to take notes because my back was spasming so hard.

During school breaks, I’d see doctors. My college spring break experience? Doctor visits. Over the years, I’ve had dozens of blood tests, biopsies, MRIs, cat-scans, EKGs, EEGs, spinal taps…. I saw an endocrinologist, neurologist, psychologist, gastroenterologist, then finally:  a rheumatologist.

I was 18, still a freshman in college, when I got an answer. The test was almost infuriatingly simple. A few touches here and there. Testing tender, inflamed points throughout my body…. Fibromyalgia.

I was so happy. I remember chattering to my father all the way home about how happy I was. If you haven’t waited years for a diagnosis, haven’t wondered if you’re crazy or weak or just “sensitive,” maybe you won’t understand. But I was just so relieved. Those of you doing the math will know:  I waited 6 years for that moment. And half of the time, I wondered if it really was all in my head.

But that relief soon became a devastating grief. A quick online search showed me- it’s not so simple as just getting a diagnosis. “Incurable. Treatment can help, but this condition can’t be cured.” So…no magic wand. No fixing me.

And this is the reality for an estimated 10 million Americans with Fibromyalgia. Unfortunately, my story is not uncommon. Those with invisible disabilities often go through years of misdiagnosis or being written off. Many are told “It’s all in your head”—often by medical professionals. I stand here, on this stage, in front of you all. And I look healthy. I look fine. But I’m not. And I probably never will be.

But… I haven’t stopped trying. I can’t. I refuse to stop living my life, even if it’s sometimes very, very hard to continue. In my junior year of college, I reached my lifelong goal of studying abroad. Twice. I graduated with honors with a self-designed major. Learned Japanese. Worked at the Smithsonian Museum. Lived and worked in Japan for three years. Joined a Japanese choir and competed in a national competition. Got married to my best friend.

Fibromyalgia is not fun to live with. But it has taught me some things. I learned who my real friends are—the ones who will stick by me even when I cancel plans for the 3rd and 4th time. I learned to trust myself and my instincts, to be my own advocate. I learned that I will push a broken body to its limits rather than give up. I learned that I can get through what feel like insurmountable challenges. And I learned to never, ever assume that someone who looks “fine” isn’t dealing with something enormous.

I will never say that I’m grateful for fibromyalgia. But I am grateful for what I’ve learned about myself. I am strong. I am a superhero. And I’m not giving up.

12: Asperger’s or Autistic? FAQ

Here I’ll answer some of my anticipated FAQs.

1) Don’t you mean Asperger’s?

No, I don’t. I was officially diagnosed in 2017 with the DSM-5 (the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders) which was released in May of 2013. In this revised edition, “Asperger Syndrome” is now recognized as falling more clearly under the umbrella of Autism Spectrum Disorders. Asperger’s is Autism. So per this new criteria, my diagnosis was one of ASD. Thus, I am Autistic.

[Side note: Please don’t “correct” an Autistic person about how they identify themselves; it’s up to the individual. Many people will use Asperger’s, and that’s ok!]

Check out Amythest Schaber’s “Ask an Autistic #12: What Shouldn’t I Say to Autistic Peoplevideo. At about the 5:30 mark, they respond to the comments: “I think that you mean Aspergers.” followed by “Don’t you mean you’re a person with autism?” The whole video is great if you have time to watch it all.


2) Why do you use “Autistic person,” “Autistics,” and sometimes “Autists”? (Isn’t it “person with autism”?)

You can’t separate me from my Autism. It’s who I am! I am not a “person who suffers from/with autism” or even just a “person with autism.” Nor do I “have autism.”

I am Autistic. Period. It’s the way my brain is wired and the way I function. If I wasn’t Autistic, I would be a completely different person. I would have gravitated toward different friends, hobbies, interests, and studies. I would think, act, experience, talk, and function completely differently.  I am proud of who I am, and I just happen to be an Autistic person!

Lydia Brown, intern at ASAN (Autistic Self Advocacy Network), wrote a wonderful article in which she said:

“[W]hen we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.”

Find Lydia’s full article here, and her personal blog here.

There are a ton of materials on this subject (person-first vs identity-first language) written by Autistics. It’s essential to respect every individual’s wishes on how they wish to be referred to.

Here‘s a blog post by Radical Neurodivergence Speaking.

And Bending the Willow’s tumblr post.

And here is Jim Sinclair‘s “Why I Dislike ‘Person First’ Language.”

There’s lots more out there with just a quick Google search! Please listen to what actual Autistics are saying.


3) Why do you capitalize “autism” and “autistic”?

Again, I am an Autistic person and that is part of my identity. Many Autistic self-advocates choose to capitalize “Autism” and “Autistic” and note that it’s similar to the Blind and Deaf communities who generally prefer capitalized identifiers.

11: Like Night & Day

When I was about 12-14 or so, my anxiety, depression, and panic attacks were at their very worst. The world was a terrifying place. Night was the scariest time. During that period of my life, each time the sun set there was such a sense of absolute finality. I had a strong feeling that everything was ending (the day, the hours, the light, etc.). Each and every night, it felt like the sun would never rise again. It was so bad that I frequently had anxiety and panic attacks as the sun was setting.

Looking back, I think part of the problem was control, or lack of. The sun would go down and night would fall, and there was nothing anyone could do to stop it. Not me, not my parents, not anyone.

I don’t think it was the sun going down so much as what it made me realize. I was realizing how little power or control I really had. I was having panic attacks and health issues that made me painfully aware of how little control I had over my own body or mind. What was worse was realizing that even my parents had little power. They couldn’t magically fix me, just as they couldn’t magically make the sun rise.

I still occasionally feel this panic come out of nowhere as the sun sets. I now have such strong coping mechanisms that it rarely fazes me anymore, fortunately. But it still causes me a twinge of strong anxiety every now and again. But I have techniques. I remember that the sun is always shining somewhere in the world. I fantasize about hopping on a plane to follow the sun. I turn on all the lights and distract myself with a good book. I remind myself that–while I can’t control a lot in life–there are still plenty of things I can control.

Night Now

Looking back, it’s hard to believe that night was such a terror-inducing event.  Now, night is my haven. I’m not sure when this drastic shift occurred, but I do know that it took place over a very long period of time. It was a crawling, struggle of a transition.

I love the night. Especially late night. It’s my favorite part of the day in many respects. The night now feels as it should:  a natural end to the day.

But to me, it’s more. It’s permission to relax. I can relax from the day’s work. And I don’t mean just my job. I mean the work of functioning in the outside world. I can stop the constant self-regulation that I must perform throughout the day.

Night feels so blissfully alone. It’s wonderfully quiet, wonderfully dark, and wonderfully peaceful. People aren’t bustling around nearly as much, businesses aren’t open, cars aren’t honking, the sun isn’t glaring….

Everything is pleasantly muted: colors, lights, sounds, people, demands, responsibilities….

Night is my time. It’s just me in my space with my own rules and my own control.

Nighttime is as far removed as I can get from the sensory overload-inducing, frenzied world that some people actually appear to enjoy living in!



I take this dramatic transition as hope. Hope that I can learn the necessary coping mechanisms to turn a fear into a love. Discovery that something terrifying doesn’t have to be permanent. Knowledge that I am strong enough to be my own light.

10: What Not To Say

What Not To Say

So I’ll admit, I haven’t had a ton of experience in this yet because I haven’t told many people about my diagnosis (and therefore haven’t gotten bad responses!).  Never mind. That ship has sailed.

But I know what I fear people will say. I’d love it if everyone could take a quick look at these things and try to avoid them. But I also don’t want people feeling like they can’t talk to me and if they make a mistake, it’s game over! I understand that you might feel put on the spot. I understand that you might mean well with a comment. It’s ok to make a mistake and say something wrong as long as you’re open to learning why it’s hurtful and changing what you say.

Here’s a comic by Beth Wilson that really sums up what I’d like people to avoid saying. Please go check out her site, Twitter, or Tumblr, and consider donating to her site:

Doodle Beth's comic, "What Not to Say to an Autistic Person" There are four panels showing Doodle Beth getting more and more upset, finally pulling at her hair and gritting her teeth. Many speech bubbles surround her saying, "You don't look Autistic." "Everyone is a bit Autistic." "You must be high functioning." "So you're like Sheldon then?" "We're all on the spectrum." "Everyone struggles with stuff like that." "Don't let your Autism define you." "Is there a cure?" "You're nothing like my Autistic child." "Autism is so over diagnosed these days." and "Oh, you mean Aspergers, not REALLY Autistic."

I’m not going to go into much about why I don’t want people saying these things to me (or any other Autistic person) because it’s already been done before!! These blogs, articles, and videos are done by Autistic people who have gone through this, so I want to feature their experiences and advice.

Here’s some other Autistic peoples’ lists and explanations:

  1. Amythest Schaber- Ask an Autistic #12: What Shouldn’t I Say to Autistic People? video
  2. A. Stout’s post on TheAutismSite: 11 Things Not to Say to Someone With Autism
  3. BBC Three’s “Things Not to Say to an Autistic Person” video
  4. Lydia Brown’s article for The Mighty.
  5. Chris Bonnello- “Autistic Not Weird” blog posts:

You can also check out my post 12: Asperger’s or Autism? FAQ for more info on language and my preferences.

No need to read and watch all of these links above (unless you want to, in which case ALL THE BROWNIE POINTS!), but at least checking out some of these resources would mean a lot to any Autistic person you interact with.

Related: 29: When You Don’t Believe I’m Autistic

9: My Support System

Church

Although I am not religious now, I am grateful for my ELCA Lutheran upbringing. My father was the pastor of our church when I was a child, and being a Pastor’s Kid (PK) means that I was exposed to a lot of different people all the time. We lived in a parsonage connected directly to the church and we often hung out in the common spaces of the church at one event or another.

I was able to interact with people from many backgrounds and ages, most of whom were eager to talk to the toddler and adolescent me. I attribute a good deal of my early socialization to this. It was a safe space where I felt loved.

Another way church helped was the pattern and routine of it all. The services were very structured; I knew the general outline of it at any given point. And the music! I was able to thrive through structure and music at church. And hearing and learning the familiar stories told time and time again was also comforting. In this, I found a pattern and normalcy.

I also think that I learned to be a more kind, compassionate, and caring person being in church so often. I think it was very therapeutic in many senses. The community of it all, the music, the structure, the loving messages from the pulpit…. It was again a safe and caring space, and one that made me think and grow.


Counselors

I’ve been incredibly lucky to have been in therapy since the age of about thirteen. After a traumatic experience, I fell into a deep depression accompanied by extreme anxiety. I was lucky enough to start seeing a therapist several times a week, then once a week, then every other week, and so on. Since then, therapy has been an invaluable tool in my life.

Each time I’ve moved for school or for a job, I’ve found a new therapist and usually see them once a week, once a month, or every other month. Sometimes I’ve been able to go a year or two without a session. But I like to check in with someone occasionally to refresh my mental health and make sure I’m still on the right path.

No matter the frequency, therapy has truly been invaluable to me. Not only have my counselors helped me find techniques to work through and lessen depression and anxiety, my first therapist in particular taught me to thrive. She laid the basic foundations for coping mechanisms that I would need in order to make it through rough times in my life.

I think that being in therapy from such a young age and for so long has gifted me with a unique level of introspection, emotional intelligence, and grasp of coping skills. I wouldn’t be the person I am today and wouldn’t have been able to face challenges and do as well as I have so far without the hard work in these sessions.


Teachers & Professors

Middle school was a very difficult time for me. Sadly, I didn’t often have the support of teachers in a very overpacked school where they always seemed overworked.

But in high school, I was lucky. The band director and choir director were literally the difference between me graduating with honors and me dropping out. At least, that’s how I see it. They were always there if I needed someone to talk to. They were kind, caring, patient, supportive, and more.

Through their music programs, I found structure and discipline. And any time I needed a quiet place to relax, their offices were always open to me. I really can’t thank them enough for all they did for me in those four years.

Similarly, many of my professors in college supported me, encouraged me, and gave me places of refuge to rest when I was overwhelmed. Several of them took me under their wings and encouraged me as I created and completed independent studies, developed my own major, studied abroad, and succeeded in graduating.


Friends

I have also been incredibly lucky in my friendships. Although I went through a period of toxic friendships at one point, I ultimately ended up finding some of the most incredible, patient, funny, compassionate friends I could ask for. They have been a constant support in my life even as I continually moved abroad and out of state, struggled with mental health issues and social phobia, was diagnosed with fibromyalgia, and generally was a pain in the butt. I truly could not ask for more dedicated and loyal friends in my life.


My parents

My parents have always been my strength. Through both mental and physical health struggles, they’ve never given up on me. They created a safe, sensory-friendly home where I could thrive and grow. They surrounded me with books, music, love, and opportunities. They encouraged learning, curiosity, imagination, and scholarship. From them, I learned compassion and empathy. They have encouraged my self-exploration, independence and independent thought, but they’ve made it clear that they are there if I need them. I’m truly grateful that they are my parents.


My Wife

I met my wife at a time when I was fairly certain I might be on the Spectrum and I was seeing a therapist to begin evaluating me. Even before we were dating, I felt safe enough with him to confide in her the truth. At this point, very few people in my life knew anything was going on with me, but I somehow knew that I could trust her with this part of me.

I was so lucky (I know I keep saying that, but it’s true!) to meet this person who is infinitely understanding, kind, patient, compassionate, and loving. She encourages my self-exploration and search for my authentic self. She’s patient when I’m having sensory difficulties and she’s held me through more than one meltdown. She accepts and loves me for me. She’s the only person who knows my soul. She’s such a positive light and I can no longer imagine my life without her.



I owe so much of who I am and what I’ve accomplished so far to the people around me. I’ve been so loved and supported, and in some ways I think that’s one reason I wasn’t diagnosed until 27. Through the efforts of the people in my support system, I’ve been able to succeed rather than flounder. Through their love and support, I feel like I can do anything.

Thank you from the bottom of my heart!

8: Super Gullible (Animatronic Chicks)

When I first looked at a chart of female Asperger/Autism traits, I vehemently disagreed with the idea that I might be gullible. Actually, I like to think I have a healthy amount of skepticism. But the more I reflected on my childhood, the more I remembered instances of being over-trusting as a child and teen.

One memory stands out vividly.  Shortly after a trip to Disneyland when I was about 8 or 9, we visited Chicago’s Museum of Science and Industry. They had an exhibit called “The Hatchery.” In the center of one room stood a massive, hexagonal, glass incubation case. It was filled with dozens of eggs and egg shells. I remember seeing the top of one egg move sluggishly as the chick inside worked to get out. I was absolutely blown away.

I turned to my dad with starry eyes and demanded, “Is it REAL??”

With a straight face, my dad replied something like, “No, honey. Remember how Disney had so many animatronics in their shows and rides? Amazing what they can do with animatronics now!”

I remember being so confused and torn between what I saw with my eyes and what my father was insisting. I remember he kept the gag going for a while before finally fessing up. I was really angry and confused.

Fortunately, I can laugh about it now and I bring it up anytime he tries to pull a fast one on me. We even have a running joke in my family where–anytime we think my father might be joking and trying to trick us–we say, “Animatronic chicks!”

This is only one instance, but there have been a lot like this one over the years. It’s taken a lot of effort and healthy skepticism, but I have gotten much, much better at spotting lies. I probably owe this skill to my father.

I sent my parents this picture from the museum’s current Hatchery website (with my alterations). [The unaltered picture can be found on the Hatchery website. I do not own this picture and this is not my father or myself. It’s included for comedic effect. Please don’t sue me. lol]

A still image from the Museum of Science and Industry's site. A father and young girl look into a giant chick incubation cage. A photoshopped speech bubble attached to the father reads, "Amazing what they're doing with animatronics these days!" A line at the bottom reads " 'Betrayal' circa 1997."
Photo credit: The Museum of Science and Industry

 

[Image description: A screenshot image from the Museum of Science and Industry’s site. A father and young girl look into a giant chick incubation cage. A photoshopped speech bubble attached to the father reads, “Amazing what they’re doing with animatronics these days!” A line at the bottom reads ” ‘Betrayal’ circa 1997.” ]

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.

6: Why I’m Writing This Blog

If you’ve read the post on my homepage, you’ll have a pretty good idea of why I started this blog.

I have three main goals:

  1. To look back at my childhood and the years before diagnosis, see where I started to mask my Autistic traits and to mimic “normal” behavior, and find who I am authentically.
  2. To give people on the outside a look into an Autistic brain and life.
  3. To reach out to others like me who have gone (or still are) undiagnosed or misdiagnosed.

There’s another goal though. I’ve grown so much since I started to realize I might be on the Spectrum, and even more so since my official diagnosis. But it’s been pretty lonely. I’d love to connect with some fellow Autistics.

But I’d also like to more fully connect with my friends and family. Carrying around this secret has been really exhausting and isolating. I don’t feel like I have very many people that I can talk to about it all and that’s been frustrating and scary. I don’t feel ashamed or embarrassed about being Autistic and I don’t like feeling like I’m lying.

I also hope that sharing this blog with friends will help them understand my behaviors more. They’ll know why I sometimes wear ear plugs or make multiple trips to the bathroom at a restaurant (See: sensory overload). They’ll see how much energy goes into everything that I do. They’ll understand why I have to cancel plans sometimes even when I really, really want to see them.

I would love to talk about Autism openly!

If you are a family member, friend, or acquaintance, know that I don’t want you to tiptoe around me or my Autism. I don’t want you to feel uncomfortable or to treat me like I’m fragile. And I don’t want pity. I love to talk about Autism and being Autistic (it’s who I am and I love me!) and welcome dialogue when I have the energy. I only ask that you see my post on “What Not to Say” to an Autistic. It’s ok if you make mistakes (if you’re willing to learn), so don’t stress too much. Don’t feel like you need to walk on eggshells!

I won’t lie. I keep going back and forth about whether or not I should share this blog with anyone. It terrifies me sometimes. But it also excites me! And the thought of continuing to live with this secret and my masks is much more horrifying to me than being open and honest about who I am.

5: Sensory Overload & Control

I have a lot of sensory issues. I have enough that I will be writing multiple posts where I talk about each sense and how I experience it because there’s just so much to talk about. This post is primarily to explain what sensory overload feels like to me and how overwhelming sensory input makes it necessary for me to control my environment.

If you don’t know anything about sensory overload or Sensory Processing Disorder, this (quite accurately terrifying) video is a good place to start. It does a fantastic job of painting a picture of the kind of sensory overload I tend to experience. I would say “Turn down the volume!” but since we Autistic people don’t get the luxury of turning down our surroundings, it could be interesting to try to watch with the volume as is. That being said, don’t blow out your eardrums or overwhelm yourself too much! If you have sensory issues and/or anxiety, I don’t recommend watching the video. I couldn’t make it through and what I did watch made me incredibly anxious and emotional. 

This is one example of one of my worst recent experiences with sensory overload:

My family visited me one summer while I was living and working in Japan. During one of our outings, I had a sensory overload induced meltdown. It was a hot, sunny day. Temperatures were over 100° F that day (38° C). Sunlight glittered off any shiny surface. The heat and brightness from the sun beating down on us made me feel nauseous and dizzy.The humidity stuck to me like a damp, hot, fuzzy blanket taken prematurely from the dryer and forcibly wrapped around me. The sweat trickling down my back was too much; it felt like insects crawling all over me. Tags and seams on my clothes felt like razorblades digging into my skin.  My feet throbbed from walking all day. Even the taste of water was too much. I couldn’t handle all the sounds around me, even after shoving earplugs so deep into my ears they ached.

I lashed out and snapped at my family and even (quietly) at strangers who were “too loud.” I didn’t want anyone touching me to comfort me. I had nervous twitches and had to keep tapping my fingers repetitively against my leg (a form of stimming) to focus and cope as I raced back to the hostel. When I got there, I grabbed my mother’s noise-cancelling headphones, curled up in the fetal position and pressed the headphones to my ears with the earplugs still inserted. Even that wasn’t enough. Even the sound of my own breathing was too much to handle. It felt like something was crawling under my skin. A few times, the sensation became too much and I had to flail my arms as hard as I could to get the feeling to stop. Eventually I could sit up, and then began rocking back and forth. Throughout it all, I was mostly nonverbal; I became mute….

I’ll write more about my sensory experiences in further posts, but I hope this gives some idea about how sensory processing difficulties can add up and overwhelm someone.


Control

Some people like or need to have a sense of control over a situation. Some people seek that control as a power trip. There’s often a bad connotation of the word “control.”  

But I personally find my occasional need for control stems from a want to have a say in what little I can in a world not made for me–not designed for me. In a society that feels chaotic and takes all my willpower to exist in without melting down, I’d say that a little control is justified.

So, what do I mean by control? Hopefully these things seem like small adjustments to neurotypicals, but they are huge for me. Ideally, I like to have some say in some of the following when out in a public setting:

  • Being able to choose where I sit.
    • If I can keep track of noises and people visually, I can deal better with noise. But if it’s a crowd, the noise is behind me, or I can’t find the source, I can’t anticipate when it will happen or see the source as it makes the sounds. Additionally, having someone or something behind me making noise makes me extremely uncomfortable to begin with. I prefer to be able to track things at all times. I need to know what sort of social, sensory input will be coming from and when or at least have a vague idea.
    • The lighting in a room can make all the difference, especially if it’s crowded!
    • Trying to sit somewhere I won’t see a TV screen that will distract and overstimulate me.
    • Not sitting next to or nearby someone with heavy perfume, cologne, or cigarette smoke on them.
  • Being able to control volume and type of sound
    • If the music is too loud or someone is drumming their fingers or clicking a pen incessantly, I need to be able to either wear earplugs or headphones or ask someone to stop a behavior.
  • Being able to choose what I want to/can eat without judgement
    • I have a lot of trouble eating certain foods. I’ll go into detail about this in a post about texture and taste, but being able to order whatever I want without comments or judgement is key.
  • I need to know I can leave
    • I need to know that I can get up from the table and escape a quiet space like the bathroom, outside, or the car.
    • Knowing I can leave a situation or environment, whether temporarily or permanently means I’m able to remain in a stressful situation much longer.

I often don’t get to have this kind of control over my environment in public, but I’m getting better at learning to ask those I’m with to accommodate me. I’m still working on not feeling selfish or overbearing, but these requests are not pickiness. These things are not whims or me being a control freak. These are small adjustments or allowances people can make (which often should not affect them much) that can make a tense, stressful, overwhelming, or even scary situation a pleasant one.

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