After all these years of beating myself up for not being able to overcome my self-consciousness, I find that I'm not really an insecure person who can't get past herself, I am autistic. The times I'd stress and spiral over social interactions, and micro-analyze casual conversations were sensory overload and processing disorders. I couldn't talk therapy my way out of my looping thinking patterns and self-defeating thoughts no matter how hard I tried. It wasn't a character flaw or a lack of will power and certainly not a lack of faith, as my long time counselor implied. It is simply a matter of having a different kind of brain. What a relief it has been to discover this. Suddenly there is a wide open field in front of me after years of clinging to a craggy narrow path.
There is a common misconception about autistic people, that we lack emotion or empathy. That we are not social or engaged in the relational aspects of life. So much of the research has centered on a specific demographic with specific outward traits, that girls from my generation and with my compliant and quiet personality, just did not fit the profile. And as the way of the world is still very centered around the patriarchal views, even as the science evolves, the mainstream misconceptions remain.
The truth is we are highly emotional and empathetic. Many people who self-identify as empath's are likely undiagnosed spectrumy people, trying to make sense of why they feel everything so deeply, and see details other people often overlook.
There is no filter.
We feel it all and have trouble regulating our emotions. I am a crier and a laugher mostly. Many of my smiles are forced and many days I can't remember how to train my mouth into a grin when a camera is pointed my way, but my laughter is genuine. I love to crack jokes and love to hang out with my friends. The higher energy involved sends me crashing under the covers afterwards, but it isn't because I'm shy or simply introverted. It's because the energy required to be out in the world, when there is no filter to keep from absorbing it all, is physically exhausting.
Yesterday was an annual visit to my doctor. I really would benefit from seeing her a lot more frequently, but her practice is private and the appointments are expensive out-of-pocket and out-of-network, so I limp along throughout the year until she makes me come in for bloodwork to get more refills on my prescriptions.
This year, with the new diagnosis in hand, I discussed my chronic illness packaging with an enlightenment that has been missing my entire adult life. The connection between Autism and the health issues I have is strong. The generic "connective tissue disorder" and diagnosis of Lupus only covered some of the symptoms. The newest diagnosis of Mast Cell Disease and Mastocytosis, covered a bit more. The knowing of the one thing, has lead to the discovery that the likely umbrella for what I experience physically is EDS - Ehlers Danlos Syndrome. All of the myriad unexplained and seemingly unrelated symptoms, the way they've increased in severity over the years, all of it fits this newest diagnosis. Another piece of the mystery is solved.
Many patients with EDS take a medication known as LDN and we discussed the possibility of me giving it another try, since I hadn't given it a fair shake when I tried it for Lupus many years ago. The doctor mentioned the potential for vivid dreams and suddenly I find myself laughing with her about the vivid sci-fi like dream I did have when I tried taking this med before.
I was lying on a bed in a room on the second floor of a house. Nothing was familiar, but I knew my family was downstairs, as if we lived there. Staring up at the ceiling, I felt a dizzy sensation and realized the ceiling was moving, but it wasn't a ceiling at all. It suddenly dawned on me that there was no roof on the house and I was staring at the underbelly of a slow moving spacecraft. Like, Star Trek level, intricate looking machinery that was vast, and a mere inches above the house.
As I watched the thing above me, I was keenly aware of how conspicuous and vulnerable I was. I remember thinking that I hoped "they" didn't see me. I wasn't afraid, but I didn't want to be seen and I didn't know why. I had no idea who they were or what was happening.
Recalling that dream, those words in my own thoughts leapt out at me "I felt conspicuous, vulnerable, and didn't want to be seen." This was what life has been like not knowing I was Autistic! A trip to the grocery store on a particularly hard day came to mind. It wasn't anything happening in my life that made it hard, it was the loud volume of the music over the speakers, the glaring overhead lights, the crowds, the feeling of not finding what I needed, and every single last person that I walked past sent me into spirals of self conscious looping.
Do I smile? Say excuse me for standing in the spot someone else wanted to be? Smile. Don't smile. Be polite. Say hello. Look friendly. Don't speak! OHMYGOD! That sounded stupid! Don't look! You looked rude! You look weird! You are making a big deal out of nothing!
I felt conspicuous, vulnerable, and didn't want to be seen.
Recounting this hard day to my therapist later on, not yet knowing the truth, she cocked her head and simply said, "life is not supposed to be that difficult".
Indeed.
Knowing the truth about my brain and my physical health is everything. Knowing may not change everything around me, but it changes something pretty profound within me.
I am not insecure. I am hyper-sensitive, I am unable to filter. I have a sensory processing disorder. Now I know on hard days that I can simply duck my head, put on a pair of headphones and keep to myself.
I am not flawed. I am a beautiful empathetic human being.
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