The Moment-By-Moment of Communicating With My Autistic Son

Typing his thoughts on Facebook opens a portal into the outside for Nat

Psychology Today, May 2, 2020

The burst and bubble of spring blends perfectly with the landscape of being at home with Nat, my 30 year-old autistic son. The coronavirus-colored moodscape rolls through me and around me, never letting up. These days, I feel almost too many things packed into my body. Anxiety about nothing, giving way suddenly to joy. Boredom, then sadness. Followed by relief, at 7pm, when dinner is over. Then I just relax, snuggling deep into my couch.

I think Nat is prisoner to the same relentless vicissitudes in mood. One moment he will be sucking his thumb as if it is his main sustenance — the frenetic chirping is like a starving baby bird — and the next moment he’ll be grinning. I hear the chirping and I get tense, scared. This is from years and years of autism trauma, and he is still capable of terrible eruptions, jumping up and down on piston legs, screaming and hitting his head. This switches on my anxiety and despair that it will never change, that the behavior is back, that there will now be seven more years of famine. Then the smile comes back, and it all washes off me.

When Nat smiles and throws himself back into the light this way, I get splashed with it, too and just like that, my battery recharges. “Want to do some Facebook?” I’ll ask, and he always says “yes.”

Facebook has become a dependable portal to the outside for Nat. And so several times a day I get to feel the wonder, the rainbow-high of seeing Nat create his own Facebook shape and persona, just like we all do there.

Nat’s posting style is a reflection of himself: deeply quiet and fathomless, and then suddenly — he’s out. I watch him as he thinks slowly and deeply about the prompt, “What’s on your mind?” He then says that out loud and then types the question. Watching him I have come to realize that he needs all his senses, all modes (reading the words, speaking the words, then typing them, and sometimes even hearing me repeat them; sometimes a gentle nudge of his arm) in order to craft typed thoughts.

It is in these moments I am incredibly “on,” too. I use my ability to “meld” with him so that I can help pull this stuff out of him, these precious expressions of “here I am.” Then even after all of these actions, he still needs long seconds of silence and thought. I don’t know where his brain goes during those times because mine doesn’t do that. My mind is more squirrel-like, squiggly and focused and chaotic.

But suddenly, like the way a green shoot simply appears one day in a buried garden, his thought pops out. I hang back then, become separate again, and marvel at it, and the gasping beauty of this one word. My reaction is as acute as when he was a baby and uttered his first words, or first crawled or walked. “Sickness,” he whispered recently, and it was as if the wind picked up, a sudden spring weather shift. “Oh, you are thinking about the sickness and staying inside and not seeing anyone and when it will be over,” my words spilled out, bursting the dams he builds of his own soft need for silence.

But my interruption is okay, because he wants it. He and I blend again; he wants me to pick up that thought fiber and thread it into a needle so that he can create. I give him some probable choices of words to type: “Sad about the sickness? Scared? Don’t understand?” and he picks one. He says it out loud: “Sad about the sickness.” And then adds “Summer.”

I feel like I am grasping a needle — his thought thread is so short it threatens to fall out — and make a new stitch. I say: “Oh, you want it to be summer so that the sickness is over.” And then: “Yes.” And I tell him, “Type it.”

And just like that, Nat creates a Facebook post and clicks it into the world. And luckily, there are people in our world who care and love him so deeply that they, too, are overjoyed by this tiny-but-huge sentence. They answer back, they find the thread, they offer an abundance of fabric for him to land on. Then I read the comments, and it all begins again.

It takes a lot of time and energy to be Nat’s nurturing earth, to be a visitor to his thoughts, and that is why by 7pm I am drained. But usually very content to just meld with my couch, get filled up with Netflix and too many snacks, so that the next day we can begin again. Because these moments of acute communication are the stuff that my joy — my sustenance during this strange time — is made of.