We’ve known for a long time that progress for kids with autism is uneven. But sometimes if feels like all we are doing is going through the motions, with no progress. The motions themselves loose their meaning and become rote, we don’t even think, just do.
As we trudge along, stressed and tired, days, weeks, whole months feel like a long, dark tunnel. We don’t know how far we have to go, can’t see how far we've come, and we don’t truly know where we are headed. Suddenly we round a bend, and we see something that makes every step worthwhile. Maybe a skill is acquired, or maybe it's just a flash of what we hope is the future.
A couple of weeks ago, my husband left our boy’s room after putting him to bed. “We just had a conversation,” he told me, with a stunned but excited look. He told me about an unscripted exchange in which my son replied appropriately to a series of questions with novel language, meaning he wasn’t repeating something he’d heard (echolalia) or reciting something he’d been taught to say. He was clearly expressing his own ideas with his own words. The ideas and words weren’t complex, or even on par with what a typical five-year old might say, but his expressive language exceeded anything we’ve ever heard from him before.
In the morning, and for the next few days, we tried (somewhat compulsively) to engage our now tight-lipped boy in another conversation. We never got as far as Barry did that night. That didn’t matter, we had seen a flash of that potential everyone perceives in him that never quite reaches the surface, and it was exciting. Reinvigorating. I wrote a letter about it to his brother, my oldest son who has been away at camp for weeks. He, maybe more than anyone else, is stung by his sibling’s inability to communicate. He’s often the target when his littlest brother is unregulated and is looking for someone on whom to take out his crazies. Big brother tolerates a lot, but also grieves the barriers in their relationship. He takes autism personally, and takes it hard.
As you might guess, our little guy really misses his object of affection and aggression. Several times a day he recites a line from the social story I made in preparation for his brother’s departure. “I will miss him, but he will be home in a few weeks,” he repeats. This alone lets us know how keenly he feels his brother’s absence, though he’s never been able to express it with his own words. Then, the other night, he did something that nearly blew us over.
Our boy was watching Despicable Me on his iPad (again). In the story, a softy villain adopts three girls to help him execute his latest evil scheme. Of course he and his household of minions quickly become attached to the charming girls and they become almost a family. Seeing how affected the villain is by the kids , his assistant arranges the return of the girls to the orphanage. We know the story very well around here, not just because parts of the movie are played just about every day, but also because the boy will recite whole scenes verbatim.
But as he watched that night, he wasn’t reciting lines from the movie, though he can recite whole scenes verbatim, including the soundrack. As the scene when the girls are dragged away approached, we heard him reciting lines from the social story about his brother going to camp. “My brother is going away for a while, I will miss him,” then, suddenly, be began sobbing! Watching the little screen he exclaimed “He cannot look at the girls” and crying, completely overwhelmed by his, and the character’s, sadness. He was reading the characters expression as he walked away from the girls as pain, not the indifference Gru hoped to show. A very subtle reading of emotion, indeed.
Um, huh? This display of understanding another's emotions (albeit a cartoon) was so far beyond our expectations for our autistic five year old child, so far beyond the kind of empathy that any autistic person is “supposed” to show. We just stood there gaping, unable to truly believe what we were witnessing. Not a sudden light, more like the rolling thunder of a train that approaches, passes, and is gone. His own strong feelings of missing his brother helped him perceive the emotion of another and empathize.
He wouldn’t talk about it later. He doesn’t have the words and he won’t let us put words in his mouth this time. It was a completely spontaneous event, but the culmination of so, so much work. I’m not surprised that this pivotal moment would hinge on my oldest son, whose place in our family, if we were a single organism, would be it’s heart. I’ve always noted that my two older boys are their brother’s best models. And, I think, hope, pray, they will always be best friends, and that they will always know what is in the others' hearts.