Connection and Autism: It May Not Be What You Think
Our quarantine days are teaching me more about my son's autism.
Posted Jun 15, 2020
Years and years ago, when my autistic son Nat was first diagnosed, one of his teachers told me that I should keep him as engaged as possible because "everything that he would be capable of doing would be because of me." Her words scared me. I was completely responsible for all of Nat's knowledge? None of his learning would be organic and developmental? I internalized her words and they grew like a cancerous mass inside me. There was no curing it. I was utterly responsible for all that Nat would ever do.
Autism science seemed to back me up in this. I learned that autism was neurological, residing in the brain, specifically in the limbic system. I always felt that despite its seriousness, limbic had such a different feel to it, conjuring up images of floppy soft lambs. But the reality is, the limbic system is deeply important because it is the mechanism for making connections, linking things like images and memory, and generalizing A + B = C.
Before I even knew about autism or limbic systems, I had my cancerous feeling because I knew that Nat was not developing according to the books and I did not know what to do. One of the possible earliest signs of Nat's lack of intuition may have been that he did not know to tilt his bottle up; we had to lay him on his back to drink. It felt to me like Nat did not connect getting milk in his mouth with the milk-filled object in his hands. They were separate factors. He did eventually learn how to drink properly but it happened later than normal.
I did nothing about Nat's oddities because there were so many other examples of things Nat could do on his own. When he was about 8 months old, he learned what reading was—not that he learned to read, but he suddenly understood the purpose of being read to and that it was a good thing to do. He would listen to the story and when it was finished he would close the book, take it out of our hands, and hand it back to us saying, "Uh, uh, uh." This display of independence and comprehension was miraculous and breathtaking. And so we read to him constantly. Not only was this a milestone in Nat's development, it was a huge change in our relationship with him because it was something we could enjoy together. And he knew it and valued it. We would get high on storybooks, filled with a light and sweet joy from this simple, mutual activity.
Nat also learned how to crawl, walk, and even babble at just the right age, so my concerns about him were always squelched because, well, here was evidence that he was fine. I and everyone else around me—including our pediatrician—constantly made excuses and invented an entire mythology about Unusual, Special Nat.
And he is unusual and special. He is also deeply autistic. And connection is a huge challenge for him. I do not mean that he cannot connect with people. He can. In spades. His eyes follow me around like an acolyte's with his priest. He is hyper-aware of me and his dad, tuned in to our emotions and conversations so that even if we whisper about something like ice cream, he will hear it on the second floor.
Nat also connects beautifully with his online classes that his day program is providing during coronavirus quarantine. He sits, riveted by the curriculum of morning meeting—what's the weather, the date, a safety skill, a current event— but he watches, still and silent if I am not sitting with him. When the activity leader asks a question, Nat will answer but I have to prompt him. Then he turns to me—not them—and answers. I have to tell him to raise his hand. Then, to keep it raised. Raise it again, Nat. Nat, keep your hand up. And then when he's called on, he has to unmute himself. He might not remember this. So he might sit there while everyone waits for him to answer. If he does think to unmute himself, he does not often answer—unless I prompt him. And then when he does answer, they cannot hear his soft voice.
Oh, the missing links just kill me. Because I know that he knows so much and wants to be a part of things. It's evident from his religious adherence to the Zoom calendar, all the way to the way he stretches towards the computer, his neck like a cable looking for its outlet.
Closing circles in this way is such a challenge for Nat, yet he can do it—as long as there is someone with him watching and picking up that broken link. And when he does complete a communication circuit, there is an electricity in the air because both of us are so excited that it has happened. So the silence that I find with Nat is not about lack of connection or interest; it is about difficulty connecting the parts in a given activity.
I inhale those triumphant moments. These days of Susie's Little Day Program (what I call our quarantine activities), there are many such bright spots. And yes, that teacher was right in that Nat does indeed require direct teaching and dedicated support in order to learn many things. But he does not have to learn about joy and pride in his achievements; he does not have to learn that he can count on his mom and dad. He does not have to be taught the pleasure of being with people, onscreen and off. And so I no longer say that the responsibility of Nat's knowledge grows in me like a cancer. I would say that it spreads inside me, from his brain to mine, lambent and limbic.