The year spent working on the letterboard with my mom has been the best year of my life. I have allowed myself to be known. I have also gotten to know my mother as well.
Before this journey began, I was locked up inside my head, looking for a way to show the world I wasn’t intellectually disabled. Since I was eight years old, I realized that I could read. But I knew then that very few people would believe me, mostly because I seemed so weird. Unable to speak, feeling distressed that my life wouldn’t change much, I believed that no one would conceive that a boy like me could read as well as a neurotypical one. But kids are more resilient than assumed.
Until I was able to spell, I could rarely communicate beyond basic needs. No one knew I really existed–at least, not in a significant way–until I pushed myself to show them through the letterboard. How I yearned to be known! That, or to be understood as a human, with thoughts and ideas about little and big things. I was autistically stuck in my brain and I could not escape. I faced a future of killing time and making tiny advances in ABA, leaving all hope at the door. Every day looked like the prior one, with little alterations around the edges. To autistically explain it, I would spend my days in boredom, longing for someone to save me from eternal stuckness.
To not let my body be taken over by my mind is a minute-by-minute struggle I must engage in every second of the day. I am not able to wish it away, despite my best efforts. For instance, sitting here, spelling out these words with my mother, has been a very grueling yet cathartic experience. She needs to muster all of her patience, trying to keep me on task as I stim and groan my way through each sentence. In each session, she must tell me to look at the letterboard so that I touch the right letters and focus on what I’m doing. Sometimes I can type on a keyboard, but am often too overstimulated to focus on the task at hand.
I often have to stim when I should instead focus on pointing at letters. This means that I touch everything I see on the table and on every surface nearby. I touch my clothing to sense its texture. I bang my hands on the edge of the table to feel its solidity. I keep one eye focused on a hangry search for any particles I can identify on the table. If there is paper, I must tear it up. If I don’t, I will never be tamed. The stims get in the way of my connection to the world, yet I can’t stop my compulsion to carry them out. It’s as if I am a slave to them and they are my master. If I ignore them, I feel like I will explode.
I am never going to not be autistic. That is reality. I will always face an uphill battle of fighting against my master, struggling to stay one step behind my autism. No one will rescue me but myself. I must slay my autistic impulses. Somewhere upstairs in my brain, that means that I must get control of my body and spell myself into existence, pushing myself towards freedom.
The time I’ve spent with my mother this past year has left me with a feeling of “future nostalgia”. I feel as though I will relive this year over and over again until the day I die. She pushes me to autistically wrench the words from my soul for you to consume. Rarely does someone fettered by disability get to reach the kind of learning I have touched this past year, and for that, I have my mom to thank. When she foments these thoughts, I can seriously see myself as a writer who will break the mold. Only when I stop to think about it do I realize how far I have come; this experience has shown me that people can change. Every time I write, I become a bit more certain about who I am. You are helping me shape my story.