15: Diagnosis & Coming Out

If you haven’t already, please read my blog post “13: Women and Girls” 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. *tries not to vomit*

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 on the Spectrum, 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 on the Spectrum often present very differently than men. (See 13: Women and Girls 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 Sara, she has 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 Sara. I am Autistic. I am me.”

 

[image description: An image of a delicate bright pink rose that’s covered in raindrops.]

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 trascript 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.

[image description: A bird’s eye view of some daisy-like flowers. The ends of their petals are deep purple, but the inner parts of the petals are bright white.]

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.

 

[image description: A table with many flower-shaped lamps on them. The background is dark and the red and yellow flower lamps are shining brightly.]

2: Meltdowns & Pillars

Meltdowns

It’s rare that I have a true meltdown. I do experience sensory overload (which I’ll talk about in another post) quite often, but a meltdown is a true collapse of my ability to function. I often hyperventilate. I cry or even wail uncontrollably. Sometimes I rock or sway or thrash or bang my hands on the ground. Other times I’m mute and stare blankly ahead; I may become unresponsive. I literally can’t even think about completing even the simplest of tasks.  I become needy and childlike and feel vulnerable and broken. I go masked, “normal” person to fully, obviously Autistic in 30 seconds flat. Not many people have seen me this way.

In the last year or so, I can think of three significant meltdowns:

  1. During the process of moving from Japan after 3 years living abroad.  I knew it would be a stressful process so I planned well in advanced, did everything I was supposed to (and more), and thought I was ready. I should have been more than prepared and it should have been a fairly painless process. Then some insane wrenches were thrown into the mix which involved unexpectedly needing to facilitate moving furniture across the city in a short amount of time with: a car/van, international license, and manpower which I didn’t possess all while attempting to pack, clean, and prepare for returning to the United States. I was dealing with grief over leaving my job and friends, a strong sense of shock and betrayal toward the people who had ruined all of my planning and hard work, and my fears about returning to the US. This was by-far the largest meltdown I can remember having and it was actually really terrifying for me (and my husband!).

  2. After a post-wedding bridal shower planned by a family friend for my husband and me. There were so many emotions that day, but the biggest drain was the mix of people who attended. There were friends from my middle and high school days, kids that I used to babysit as infants who are now taller than me, coworkers of my mom who I grew up looking up to, my husband, and my family. In that mix of people, I had no idea which mask to wear or what role to play. I couldn’t relax and be with my friends and show a more immature side to my mother’s coworkers. Nor did I feel entirely comfortable being my old babysitter side around my friends or family. I couldn’t even act like I do with my family or with my husband. I felt awkward almost the entire time. It was a lovely day and I had a lot of fun, but just before bed that night, my body and mind told me they had finally reached their limits. This was a mini meltdown and more akin to an anxiety attack due to exhaustion.

  3. During the moving process into our first official apartment together as a couple. This meltdown came after a day or two of the moving process, sitting in the car on the dreaded highway 40 minutes each way, unloading a storage unit into cars and trucks, hauling boxes inside, etc. While we were trying to fit our brand new couch through an unexpectedly (nearly too small) narrow doorway, I got a text abruptly changing plans for the remainder of the day and I had finally had enough. I felt the tension and panic build until I finally collapsed on the recently (triumphantly!) settled couch. I couldn’t bear to do one more thing until I rested. I cried and rocked and my husband and mom tucked me in on the couch to nap while everyone went to go get another load of boxes. This was a medium-sized meltdown which left me helpless for a while.

Pillars

When describing my meltdowns to my newest therapist, she said something that really hit home and made a lot of sense.

She held up her hand and touched each finger as she said, “Mental, Physical, Emotional, Social, Sensory. Each of these has a threshold. Most of the time, you’re able to keep at least some of them in balance and are able to handle things. You’ve developed ways to deal with a lot:  overstimulating things, constant pain from fibromyalgia, your social anxiety, etc… You’re constantly pushing you mind and body. But sometimes, when all or most of these pillars have been overtaxed for too long, your body and mind just can’t take any more. Things need to shut down for a while to compensate.”

This is the perfect explanation. When looking at the three meltdowns above, I can see the pattern well. These were already high-stress situations, but nine times out of ten I can handle the stress. Over the years I’ve developed ways to deal with a lot of challenges and function pretty smoothly in most situations. It’s these unique times when the majority of my pillars have been too overburdened for too long when I snap and cannot handle anything further.

I sometimes think of these pillars as video game stat bars. Sometimes I can almost feel one of my bars blinking red. LOW HP! ABORT MISSION!! If I’m out socializing, my meter dips further and further toward the danger line. It starts out at half if the environment is noisy, crowded, or bright. If I overexert myself, I’d better hope that I haven’t exerted myself too much in the other categories, otherwise I will have no choice when my mind and body shut down for a rest.

Meltdowns are not “tantrums” and I have very, very little control over myself when I have one. I am vulnerable. I am scared. I am exhausted. I dread the day that a bad meltdown happens around friends or even strangers, but I have hope that someone around me may recognize my needs and help me to a quiet space where I can refill my pillars.

 

[image description: A patch of Polka Dot plants, dark green plants with splotches of bright pink polka dots. The pink is vibrant and bright.]

 

You can hear more about my meltdowns and shutdowns and the pillars in my YouTube video: