A Letter to My Twenty-Year-Old Son on World Autism Awareness Day

Dear Jim,

It’s World Autism Awareness Day, but I’m sure you know that. For me, every day is Autism Awareness Day.

During your hospitalization at Kennedy Krieger Institute in 2017, I was told it was possible that some of your self-injurious behaviors and aggression were likely stemming from your inability to communicate. This wasn’t news to me. I’d watched you for over a decade scream and cry and rage when the words wouldn’t come out. I’d often watched you with a combination of heartbreak and awe, thinking, I’d put my head through a wall too if I couldn’t tell anybody anything.

After begging a speech pathologist to trial devices with you— figuring that since you were able to navigate through folders on your iPad to find movies, and a step further, specific chapters and scenes in those movies, you could probably do the same thing with words and items if the motivation was high enough— at age thirteen, you’d finally been given an AAC device and a team of people committed to using it with you. The device you left the hospital with had only four pictures on it, that when pressed, would say the name of the item you were requesting and you were immediately reinforced with that item whether you wanted it or not, to teach you the power of communication and the value of the device. I’m sorry if you thought I was confused.

Within weeks, you mastered those four buttons. Out of my mind with excitement, I added more, and you caught on quickly. Realizing the app we’d been given was too limited, I researched and purchased a more advanced one, with the ability to add hundreds of pictures and categories.

I spent days setting up folders, carefully selecting images and arranging them in a way I hoped would make sense to you. I actually gave myself two panic attacks, afraid I would be responsible for keeping you locked in silence if I configured it wrong. We started with what motivated you most—movies and food.

Before the device, you had no way to tell me what movie you wanted to watch. Grabbing my arm, you would pull me over to the tv, put the remote in my hand and engage in self-injury while I played the guessing game of finding the right one, while trying to protect you with my other hand.

With the new app, I created a folder with thirty-two of your favorite movies and you lit up with excitement, immediately pressing the button with the image of the Shark Tale movie cover on it. Finally, you could tell us!

Then, something miraculous happened. You and your brother, Christian, were playing, and he accidentally hurt you. Seeing an opportunity, I grabbed the device, opened the ‘People’ folder, and asked, “Who hurt you?” Without hesitation, you pressed Christian’s picture. Completely stunned, I asked again, just to be sure. Same response. My heart raced. What else could I ask you?

The next day, your therapist, Sky, helped us with what seemed like an interrogation. She asked you questions about objects around the house. “Where do you sleep?” you chose bed. “Where do you sit?” Chair. “What do you wear when you go swimming?” Bathing suit.

I stepped outside, overwhelmed. For years, experts told us you had no receptive language, that you functioned at the level of an eighteen-month-old. And yet, here you were, proving them all wrong.

When I asked your step-father at the time how this could be possible, stressing that no one had ever specifically taught you these things, he stated what was far from obvious to me. “Imagine all the things you would know, if all you could do your entire life was listen.”

We’ve certainly had our share of challenges, Jim, but through the pain we’ve both grown. You’ve taught me more than I could ever teach you. In a world where the majority of people are concerned with acquiring more, you find joy in life’s simple pleasures and ordinary miracles.

You’ve taught me that non-verbal doesn’t mean quiet, that communication is more than words, to focus on strengths, that change is always possible, and that God is good, even though tough things happen. Every day with you is a lesson in patience, love, resilience, gratitude and faith.

The world may only set aside today, but I am awake, aware and in awe every day, watching you. Thank you for being my son, my teacher and such a blessing in my life. I love you!

Love always,

Mom