Finally Receiving My Formal Autism Diagnosis
Part 4 of my story about receiving a late diagnosis of autism at 36
Welcome to the weekly newsletter for Eternally Existential where we communally contemplate anything from the sacred to the absurd.
We’re working through a series where I’m sharing the process of being diagnosed autistic later in life at age 36. You can catch up and read the previous articles here: Part 1 | Part 2 | Part 3
On my drive home from my formal autism assessment, my mind was on fire reliving every single second of the process over and over again, especially the moment Dr. J cut off my answer to the question, “Why do you think people get married?” Her abrupt disruption of my external thought process had thrown me into a dysregulated state and I had to take an extended break to go to the bathroom and try to pull myself together.
As I was driving home, I tried to suppress the painful emotions that were re-emerging from this moment by reliving the very tender, affirming moment Dr. J and I shared at the end of the assessment. But the painful emotions from our negative interaction were bubbling like a geyser.
I thought about how I was going to share the events with my spouse and my closest friends who were witnesses of my journey up to this point. I started practicing how I would share the story with them and within a few words, the tears began to roll. I didn’t want to have to explain the events, the pain, and the process I had been through over and over again to my people so I opened the camera on my phone, placed it in the car cupholder, and pressed record.
My assessment felt so intense and invasive that afterward, I put strict boundaries around my energy and it took me about a week to recover from such an emotionally invasive experience.
Six months later, Dr. J’s finished her report and those twenty pages formally concluded that I am, in fact, autistic. I ran around the house happily screaming and crying that I was finally validated with a formal diagnosis. I shared the exciting news with people. Some were confused about my celebration and didn’t know how to respond. Others were stoked and congratulated me. I assured everyone, this was such an affirming moment in my life and not in any way negative; People think of autism spectrum disorder as a developmental disability but it’s more accurately described as a different way of experiencing the world.
I finally had an official name for how my brain and body work in the world.1
I don’t need to publicly label myself as autistic. The reason I do talk about it publicly is to allow others to feel validated in their own experience by seeing some reflection of their story in my own. I don’t need the label to feel validated in my own experience; but the label, the diagnosis — both the formal diagnosis and my self-diagnosis — has been a personal healing journey for me, internally, and in healing my inner child who spent her entire existence masking her autism to keep herself safe and accepted.
Rather than feeling like I’m a fractured, weak member of society whose daily existence is swayed by the status of her nervous system’s intake of sensory information, knowing I’m autistic has allowed me to see myself simply as differently-brained and doing so makes me have so much grace for myself.
The way I exist in the world makes some people uncomfortable. I’m incredibly sensitive. My favorite question is, “Why?” I accept very little at face value. I could talk your ear off about a multitude of topics. I research things I’m interested in ad nauseam. I have an intense sense of justice that I can’t be quiet about. I don’t pretend to be something or someone I’m not. I follow my gut over group think. I ask a lot of questions…
I’m not for everyone.
And that’s ok.
I wouldn’t change who I am for anything because I have battle scars from my journey to arrive at self-acceptance. I refuse to give away my victory of self-acceptance - a victory that nearly killed me - to anyone.
Welcome to the weekly Smorgasbord here in our Existential Spiral. The Smorgasbord is a smattering of topics I share with you for our information-dumping pleasure.
I posted this video on TikTok and Instagram where I confess that I see words and numbers as shapes and colors. Within a few hours, several comments on TT were telling me this has a name: Synesthesia!
Synesthesia is defined as “an anomalous blending of the senses in which the stimulation of one modality simultaneously produces sensation in a different modality.”2
Basically, the senses overlap one another. “When one sense is activated, another unrelated sense is activated at the same time.”3
There are numerous types of synesthetes. I have countless examples for myself besides what I gave in my video. For me, words and numbers have colors and shapes. I feel intense emotions when I experience colors and words. I feel the various parts of a piece of music in different parts of my body. Concepts exist as loose shapes in my mind’s eye and as they are made clearer to me, they take a clearer shape and develop colors and physical sensations throughout my body. It’s probably why I love and can express non-concrete concepts in metaphors. I also experience physical pain when I see another person experience physical pain.
I love being able to experience life the way that I do with these rich sensory elements. Life is full of so much darkness, sadness, and grief; something like synesthesia is a reminder that our human existence really is so very magical.
Wicked celebrated their 20th year on Broadway this week and I felt like that old lady who hasn’t seen you since you were “this high” and can’t get over that you’re already TWENTY.
Photo credit: Bradley P Johnson, CC BY 2.0 via Wikimedia Commons In my first years of college theatre and formal voice lessons way back in *GASPS* 2004, I still used a CD Walkman and carried the CD along with the Wicked songbook with me all over campus to practice The Wizard and I as one of my audition pieces whenever I could sneak away to a corner of the theatre or music building for some privacy. My husband Aaron and I met around this time. We did The Wizard of Oz together where I played Dorothy and he was the understudy for the Tin Man. After rehearsals we’d sit in his car and blast the Wicked soundtrack and sing together like we were Elphaba and Fiyero.
I have so many memories that revolve around Wicked. A few weeks ago when I found Putting It Together in my DVD stash and watched it again for the first time in over a decade, the lyrics to Sonheim’s songs hit with a greater deal of depth now that I’m older and have been through a lot of life. The same feels true for Stephen Schwartz’s lyrics in Wicked.
I relate to how Elphaba’s only desire in The Wizard and I is to feel accepted by someone who can finally help change the thing that has made her life the most difficult.
And one day, he'll say to me "Elphaba
A girl who is so superior
Shouldn't a girl, who's so good inside
Have a matching exterior?
And since folks here to an absurd degree
Seem fixated on your verdigris
Would it be all right by you
If I de-greenify you?"Of course that's not important to me
All right, why not", I'll reply
Oh, what a pair we'll be
The Wizard and IBut by the time we get to the moment she sings Defying Gravity, she’s come to understand the cost of what that change entails and her integrity won’t allow her to pay that price.
Something has changed within me
Something is not the same
I'm through with playing by the rules
Of someone else's gameToo late for second-guessing
Too late to go back to sleep
It's time to trust my instincts
Close my eyes and leap…Too long I've been afraid of
Losing love, I guess I've lost
Well, if that's love, it comes at much too high a costThe older I’ve gotten, the more For Good carries the heaviest weight. At the end when Elphaba and Glinda say goodbye to each other, preparing to never see each other again, the heartbreaking sentiments they sing make me cry every time I hear the song. There are several people in my life that are no longer around - whether they’ve passed or they aren’t active in my life any more - that have made a profound impact on me as major contributors to my story.
I've heard it said,
That people come into our lives for a reason
Bringing something we must learn.
And we are led to those
Who help us most to grow if we let them.
And we help them in return.
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you…It well may be
That we will never meet again in this lifetime.
So, let me say before we part:
So much of me
Is made of what I learned from you.
You'll be with me like a handprint on my heart.
And now whatever way our stories end
I know you have rewritten mine by being my friend.It took some years lived and painful experiences to understand the profound depth of those lyrics. Each person that is a part of our life has the ability to teach us something. I don’t say that to positively bypass the trauma someone has caused us. I say that as someone who has taken that journey and has chosen to take what was done to me - the positive and the negative - and chosen to use it to allow me to live from a deep empathetic well in order to love others harder and deeper than I ever could have without my life experiences with my fellow humans.
This is the beauty of music and the artists who create these melodious time capsules. I feel indebted to them for articulating parts of the human experience that feel inexplicable. I think that’s why I love musicals so much. In a musical, we witness an emotion come to its very apex that it’s able to and it can only continue through musical expression.
Music feels like a taste of the Divine that we get to experience while we’re here on earth.
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I want to take a second to also acknowledge, as I have in past articles, that because of a capitalistic, racist, and sexist healthcare system in the US, self-diagnosed autism is just as valid as a formal diagnosis
I love the freedom in you understanding yourself better. As I once heard, “God don’t make no junk.”