My first memory was holding the hand of my Grandmother Catherine at a train station in Chicago. The warmth of her hand stood in contrast with the chilly, rainy day. I remember the crunch of the rocks under my shoes as we stood together beside the tracks looking up at the massive locomotive engine.
My Grandmother knew I’d wanted to see the great engine on the iron tracks up close, and had simply climbed down with me to see it. I must have been three or four years old then, and my small hand reached out to touch the metal of the locomotive, lost in wonderment, imagining operating the great machine, riding the rails into the future, into an unknown place.
In the woods behind our house, I put my book The Hobbit down on the dry moss covering the bark on an old fallen tree and set out in search of Middle Earth. Once I found it, I knew I’d find my people– the Elves, and forever leave behind the cruel world of humans with their confusion, violence and death. The boy I was didn’t find the pathway to Middle Earth, but I don’t think he ever stopped looking.
“You have to look people in the eyes. If you don’t they’re going to think you have something to hide.”
“You’re a fairy.”
“You’re too sensitive to everything. Look, if you get hurt, the best thing you can do is just laugh about it. That will make it go away.”
Oh Dad, I did have something to hide. Myself.
I like fairies. I wish I could be one. Immortal, gliding through fields of brightly colored flowers, moving through deep, old forests and seeing things few mortal eyes see.
Masking my pain, my deep sensitivities. I remember breaking my arm when I was a kid. Ashamed to reveal it, ashamed to show I was weak, I hid it for days until Mom noticed my black and blue swollen arm. I told myself the pain was only a joke.
Late at night, as a lanky teenager, I sat cross legged on our shag carpet, in front of an old tiny black and white television watching the Starship Enterprise glide across the screen, boldly going where I wanted to go.
Somewhere else.
I was fascinated with Mr. Spock, the Vulcan of Star Trek.
Mr. Spock would have understood me, I knew it. In secret, I practiced my Vulcan hand salute, walked stiffly, smartly like Mr. Spock. Thrilled with the birthday present from my Aunt– a model tricorder and phaser pistol. Perhaps I could rig my model phaser to actually fire. Set it to stun the next time my Father stormed into my room.
Collecting Universal Studios Monster figurines, masks. I wanted to be one of them. A monster, an outcast, a wretched beast. At least I wouldn’t have to pretend to be someone else all the time. Then the invisible mask I wore would be visible to all. Maybe instead of just confusing people, I would frighten them, make them run away from me.
Walking back to my dorm at the University, listening as my peers teased me about the “million cues” I missed from a woman at the party that night. Flirting.
It seemed so odd, like a frequency I was missing somehow. I looked up at the night stars, and made a mental note to go find a book at the library about Body Language. I could learn flirting.
How was it possible for me to miss “reading” people and at the same time be able to feel so incredibly deeply, to feel the emotions of anyone nearby in a visceral, powerful way? In time I learned to compensate by using my powerful receptors of emotional energy from others to navigate workplaces, relationships and challenges. Empath.
After twenty years of passionately advocating, being an ambassador for great causes, raising millions of dollars for organizations, I launched my own organization. Being a parent to three diagnosed autistic children, and suspecting I was married to an “Aspie,” I thought it would be a great idea. Besides, I seemed to possess an uncanny ability to almost instantly build relational connection with autistic people.
I thought it was an amazing gift. And using it– me, a neurotypical person– helping other neurotypical persons understand autistic people. I was going to use my Special Gifting to be some kind of “neuro-ambassador.”
My new friend, Terra, watched my videos, read my writing and then one day asked me on the phone, “So, how long are you planning to go on pretending to be neurotypical?”
What a strange thing to say– to think I could be autistic myself. Of course, it wasn’t possible. I help autistic people, I certainly couldn’t be autistic myself.
But somewhere deep down inside me, the old Frankenstein Monster stopped lurching forward through the swampy murk, cupped his hands to listen to distant music.
The Wolf Man caught his reflection in the still water of the pond, and shuddered.
Mr. Spock put down his tricorder, looked up at me and raised his eyebrow.
My mask was now visible, the lines where I’d pressed it deeply into my skin were being noticed by another person. No, no, no. This wasn’t supposed to happen, the real me was supposed to stay hidden.
I believed the first diagnostic instrument would tell me I couldn’t be autistic– on the spectrum (ASD), I was sure of it. And I only needed to score below a 64 and then we could put the silly idea of my being on the spectrum behind us, move on with things.
I scored a 129.
Weeks later, I sat in the quiet office of a neuropsychiatrist and listened as he explained to me how all the testing demonstrated very clearly I’m autistic. He was kind, very professional, and asked me if I had any questions before I left. I didn’t ask anything. Sitting in my car a few minutes later, I was surprised to feel tears running down my face.
How very odd.
Wetting my mask.
Loosening the glue.
Falling away.
Unpacking.
Unpacking my accidental autistic life.
Powerfully written. This brings up in me a lot of questions I mull over. How does one late in life overcome resistance to getting oneself tested? I find resonance with being in my 50s, having raised a child, having married (he diagnosed after our divorce) and dated people on spectrum for years, never until a year ago recognizing like a bolt of lightning it takes one to know one. I find myself now in a rather happily isolated place, being content with no close relationships for years, constantly on the fence about going through a full neuropsych evaluation for diagnosis. Aside from having poor health insurance coverage, I find many obstacles to evaluation. 1) Since most people “formally” diagnosed who are able to function relatively well with basic self-care are not offered significant support as a result of their diagnosis, what is the benefit? 2) How does one get past internal resistance to embracing AS as a core part of one’s identity late in life? 3) How accurate is it to have parents or caregivers provide testimony of how one was as a young child five decades later? 4) After years of searching to understand myself in various ways, I learned there are many lenses that crossover through which to look at neurodiversity. Examples: Highly Sensitive Person, most rare personality type on the Myers-Briggs (INFJ), studying introversion. What is the primary benefit to carrying a diagnosis of AS as compared to any other framework to understand oneself? 5) With so many people who seem to fit some type of “neurodiversity,” what is normal, and how does the distinction matter as long as I can basically be self-supporting? 6) What are the worst consequences if a person does not obtain an official diagnosis late in life, when I already tend toward isolation and don’t see that fundamentally changing but intend to try to live my own best beautiful life anyway? Thanks for listening.