How growing-up between worlds prepared me for a later-in-life autism diagnosis
A neurodivergent interculturalist's journey to integrating autism as a culture
Growing-up between worlds
My first memory of childhood is from my first day of preschool, when I was three years old.
“I wasn’t enough for you anymore,” my mom tells me, recounting the circumstances that drove her to seek-out a preschool for me soon after arriving in the United States.
I remember standing in the middle of a colorful, cheery classroom, kids walking around the room in the background, looking at my preschool teacher as she bent down, hands on her knees, to talk to me. There was just one problem… I didn’t speak english.
I remember searching her face for any visual signs that might help me decode the completely foreign sounds I was getting from her- a wrinkled brow, a frown… but unfortunately I got nothing.
I remember thinking- “Well, she doesn’t look like she’s mad at me, so I don’t think I’ve done anything wrong.”
I also remember the incredibly frustrating feeling that there was this invisible, maddeningly impenetrable membrane between us. If I could JUST get to the other side, then EVERYTHING would make sense. I’d FINALLY understand what was going on.
Crossing the membrane
Fast forward a few years, I eventually learned to get to the other side of the membrane (I learned to speak english), and now spent my days walking across that membrane daily, as I made the trip from home to school, and back.
Different sides, different sounds, different rules, different customs, different worlds. It was all totally normal and yet always unpredictable.
Becoming a guide
Fast forward a few many more years later, and I found myself the new mom of a bright-eyed, insatiably curious little boy who didn’t seem to experience the world the way the parenting books told me he would. And yet, the way he seemed to be experiencing the world made sense to me.
So I began figuring-out how to help him make the trip between home (where we adapted to his needs for quiet, texture, and routine), and the outside world (where unpredictability and high sensory stimulation dominated).
Different sides, different sounds, different rules, different customs, different worlds. It all became totally, unpredictably normal… again.
This was when I first realized I was becoming a guide between worlds- teaching my son (and, eventually, my daughter) to make the trips back and forth.
Breadcrumbs
Finally, another fast-forward to the morning I sat in a psychologist’s office, ready to start a quantitative evaluation to likely confirm my long-suspected autism. (This wasn’t my first neurodivergence diagnosis, and I already mostly knew what the outcome would be; both stories for another time.)
The night before, I’d sat in bed writing a series of reminders to myself about who I am and what I know about my neurodivergence. It was a kind of grounding ritual that I didn’t realize, at the time, was intended to be a trail of breadcrumbs that would lead me back to the side of the membrane where my neurodivergence existed as a rich and beautiful world- a culture- after crossing over the next day to the side where my divergence was a disease, disability, or diagnosis; the side I’d have to travel to in order to get the therapies and medicine I might need, paid for.
I was happy to be making the journey again that day, to get what I needed and, this time, do some research along the way.
You see, I spend a lot of time thinking critically about, and grieving, the continued systemic and social struggles that neurodivergent people face, myself included. But that day, I was happy to be crossing the membrane so that I could practice, more self-aware this time, finding the breadcrumb-trail back to myself and my world- a place that I still want to learn so much more about.
An invitation
I want to continue making these journeys, in community, with you. I have stories, activities, and questions for us to dive-into, all drawing-on my background in intercultural communication, linguistics, and civil rights work. I also want to talk about ways we can better navigate those ‘real’-world social and systemic challenges in better, more empowering ways.
If you’re a neurodivergent adult/parent, or a provider who works with neurodivergent people, please subscribe! I’m creating more breadcrumbs and preparing another journey, this time, one that leads us deeper into the places where neurodivergence exists a culture.
Next week:
Stay tuned! In my next post, I’ll be sharing the reminders I wrote-down that night before my autism eval, and how that has blossomed into a monthly journaling series I’m creating to help us explore our neurocultural landscapes.