Nonverbal, But Not Silent
I am nonverbal. Nonspeaking. However, that doesn’t mean I don’t understand.
Let’s start there.
I often hear, “I wonder what goes on inside their heads.” If you’ve said or thought this, don’t feel bad. I’m going to tell you what’s gone on inside my head throughout my life.
When I was one year old, I appeared to be developing as I should. I was hitting most milestones, but not all. I even spoke a few words. My parents noticed even though I was hitting milestones, I wasn’t interested in being social. I didn’t hug and kiss often. Playing by myself was more appealing than playing with other toddlers. I didn’t engage often with my older siblings unless I had to. There were signs I was a little different. Only a little though, right?
When I was 2 years old, I continued to hit milestones. My speech was not developing any further. My parents were told I would speak. My medical team had failed to listen to my parent’s concerns, yet again. I threw big tantrums, I hated tags on my shirts, I would absolutely not wear socks, pants were awful, lights were overstimulating, and most days I would flap my arms so hard, my family thought I might fly away. There were signs I was a little different.
Again, only a little though, right?
When I was 3 years old, enough was enough. My parents became my advocates without knowing the full extent for the following years to come. They held their heads high, squeezed my hand tight, entered the exam room, and made my medical team listen. I was only a little different. Only a little though, right? “Disabled” seems as if it is a taboo word.
However, that’s what I was.
At 3 years old, it was clear to all except my doctors that I was disabled. I was different in a way my parents couldn’t quite get the words for. I hummed loudly, paced aggressively, climbed high eloquently, jumped vigorously, squeezed myself tightly.
At 3 years old, I was diagnosed with autism.
When I was 4, I began preschool. I had my diagnosis, my parents were being heard, and I had an IEP in place that allowed me to start school with the accommodations I needed.
The struggle was over, or so we thought. Yet, my parents again held their heads high, squeezed my hand tight, and listened to the people who were supposed to be on my side. They told my parents I wasn’t disabled, but stubborn.
They then told my mother I would speak if I wanted to speak and would use the toilet if I wanted to use the toilet. I would focus in class if I wanted to focus and I wouldn’t break toys if I wanted the toys to remain unbroken.
What the teachers, the aides, and everyone else failed to notice was, I could not speak if I wanted to speak. The words did not form in my mouth. I did not know how to form the words.
The toy cars had to be broken open. How else would I have seen how the wheels turn so well and how the doors open? How the horn honks and the lights flash?
They failed to see, I wasn’t aware when I needed to use the restroom. There were no warning signs for me. I was different.
I am now 18 years old. I’ve experienced teasing, pushing, taunting from my peers. I’ve been bullied by friends, who turned out weren’t really my friends. It’s easy to see I’m more than a little different. People don’t seem to like “different.”
My classmates through the years would speak to my teachers and aides about me, in front of me. They are not me.
My doctors speak to my parents about me, in front of me. They are not me.
Strangers on the internet speak to my sisters about me, in front of me. My sisters are not me.
Are you still wondering what goes on inside of my head? Here it is.
“They are not me. Speak to me. I understand. I am Alex.”
Alex Crawford, also known as Actually Autistic Alex, is a nonverbal, autistic content creator and small business owner. He makes videos to spread awareness and understanding about those who are high support-needs individuals.