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.]

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.

 

[image description: A picture of an interesting tree. It is bent and gnarled, twisting this way and that. The woods around it is a lush green. In the distance, a red bridge can just barely be seen.]

 

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.

 

[image description: A closeup of a green succulent plant. The leaves looks smooth, but have pointy thorns at the end.]

6: Why I’m Writing This Blog

If you’ve read my post entitled Seeking Sara, 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.

 

 

[image description: Bright green, rain-soaked lily pads on a dark pond. Ripples break the pond’s surface, creating patterns.]