Autism and the Loss of Skills

It has always troubled me that one aspect of autism can be a loss of skills. It seems so bleak to imagine my child thriving in one way, and then suddenly, it’s gone. It plays cruelly with one’s sense of reality.

I experienced this when my autistic son stopped singing. I remember when his singing started—I could see him sitting on my lap on the subway, shouting Frére Jacques at the top of his lungs, and the pride-plus-embarrassment I felt. Later, when he no longer sang, I hungered for that blissfully awkward feeling.

The way I’ve come to see it, my son Nat’s skills go underground like fire, apparently gone and yet somehow smoldering below, capable of bursting out at very unexpected moments. I eventually learned to keep coming back to certain things to see if they’d ignite in him again. I was thrilled when, sometime in his teens, Nat’s private autism school hired a music teacher.

This was unusual for the school because most of the focus was on life-skill-building and pragmatics, the stuff that Nat would need to survive in the world. Music may have been viewed as a luxury. But that year, they put on a show, and there was Nat, blowing us away with a rendition of Life is a Highway from Disney’s Cars movie. I didn’t know the song, but I loved it after that.

Nat’s singing disappeared again soon after that, but by then, I was worried about so many other things in his life that I could not put any energy towards that. Autistic adulthood loomed, and I did not know what his post-school years would look like. Back then—and rightfully so—my anxieties were: Who will take care of him when I’m gone? Will he ever be able to live somewhere else? What will he do with his days? How could something as butterfly-light as music survive in such a dark landscape?

How indeed. But man is not meant to live on dread alone. And so, sometime into his 20s, we were invited to a small concert at the home of one of Nat’s Special Olympics friends. Sitting there in that comfortable, colorful living room, I watched as an entire group of developmentally disabled friends performed on keyboard, violin, and guitar, songs ranging from Scott Joplin’s The Entertainer to the Shins’ Shipping Up To Boston. In the end, Nat, who had been riveted, stood up and took a bow with these peers of his—even though he hadn’t done a thing. Somehow, he believed that he belonged with them up there.

Soon after, the group’s instructor welcomed Nat into the fold, starting him on bongos.

Unfortunately, Nat did not march to the tune of a drummer, and we almost gave up on music again. But then, one night during rehearsal, the group started playing a song I hadn’t heard in some time, Life Is a Highway, and Nat just walked right up to the mic and sang along. I broke into a sweat. Nat was a singer? Again? Singing was back? Every person there was as surprised as me and thrilled to see Nat reach for that mic, taking on a far more central role in the group as lead singer.

The music group continued over the next five years, eventually joining a far larger music organization. Nat has continued to be a leading singer, but even that has changed; now, he often shares the mic with his longtime friend Angel, a young woman with Down Syndrome. Together, they may not always be right in tune, yet their voices come together in an odd but beautiful harmony that transcends the original song.

At the winter concert this year, Nat’s entire group home managed to come—five very complicated developmentally delayed men—which is no easy feat. The concert was running over an hour late, and one of the autistic housemates became anxious and screamed once or twice, but everyone held it together because they were there for their friend Nat.

And when Nat and Angel sang Life Is a Highway, I wanted to scream, too—in delight. I wept with joy the entire ride home because my happiness was too big for just a smile. Still, I never know where this road with Nat will take me—and we have traveled down to hell more than a few times in his life. But if you wait long enough, maybe try again, heaven can come back.