How music and silence coexist in the mind of an autistic boy.
Image taken by Flickr user Kevin Dooley
I was holding my sixteen-month-old son, John Henry, one Sunday afternoon in August 2011 when I nonchalantly let loose a note from that place. That place in the human singing voice right around the top of the middle that can sound like a bell. It’s a mixture of chest and head voice. I’ve always called it the mid-belt, as in, that’s where you can get a significant amount of air, or power, behind a note and belt it out. It vibrates in the body that makes it and in the air that it hits.
John Henry’s father and I are both singer-songwriters, and we were on an extended tour together. On that particular August day, we didn’t have a show to do, so I was playing with our son in the tour bus and half-heartedly watching 60 Minutes. When the show aired a profile of a teenaged gospel choir, my interest grew. The choir sang “Amazing Grace.” I sang along, but when I got to the “a” before the word “wretch” in the first verse, John Henry pushed his tiny hands into my chest and his face away from mine. I had held the mid-belt note for a little bit too long. His face broke, and he cried. I stopped singing.
Music makes me cry too. I am often overwhelmed by the beauty or emotional resonance of a voice or composition. I’ve considered it one of my more annoying afflictions—that I can become a sobbing mess when I hear a certain vocal tone or a particularly beautiful conglomeration of notes. But I had never seen that response in a less than two-year-old child. And what I saw in John Henry that Sunday afternoon wasn’t a feature of his personality. It wasn’t a development. It was more as if something had gone missing. It was the first real sign of his lack of ability to efficiently process the world around him.
Music has provided myriad revelations for me throughout my life, but this was one I didn’t welcome.
I had seen him display little behaviors that I thought were maybe odd—his tendency to turn objects over in his hands repeatedly or play with one part of a toy instead of the whole thing, or the cute way he rubbed his legs together against textured floors or in the bathtub to produce a current—we called it “crickets.” But I didn’t know that Sunday afternoon that I was looking at a human being who couldn’t manage the information he received in a typical fashion. I didn’t know it until I saw him burst into what I could tell were emotionally generated tears when I hit that note. I didn’t know it until my own mind then raced around wondering why and realized that he had been using his words less and less in the weeks that preceded that day, that he had shuddered when he heard the drum kit on the Friday before at sound check, and that he had stopped turning his head toward anyone who said his name. I didn’t know until then that my baby very likely had autism. Music has provided myriad revelations for me throughout my life, but this was one I didn’t welcome.
I tried everything I could think as any desperate parent would. I practiced the words he had learned with him several times each day, even more than I had before. I tried to teach him new ones and would tentatively allow a wave of relief to come over me when he would try to imitate sounds and said things such as “key” for “turkey,” or “bala” for “banana.” I dutifully logged his behaviors, any little thing he uttered that sounded like a word, and any acknowledgment of another person. I tried to convince myself that what was happening wasn’t happening, all the while confirming that it was indeed happening when I would check the lists of features of autism that I found on the internet against his obvious progressing distance from the world.
I began calling doctors. Then we started down the road to an official diagnosis despite everyone, his pediatrician included, telling me that my blonde-haired, blue-eyed, sweet and social child couldn’t possibly have autism. “Just look at him. There’s no way he could be autistic,” they said. John Henry began speech and occupational therapy, and even his speech therapist suggested that he had a sensory processing disorder and not autism (some say one cannot exist without the other), though his words had almost completely gone away by the time we made our way to her.
If a human face is the hardest thing in the world to look at because it is so complicated and holds so much information, then the human voice must be the hardest thing to hear and make sense of for the same reasons.
He received the dreaded but expected diagnosis the following March when he was administered the usual battery of tests. By that time, we’d started to adjust. I had stopped singing in my full voice around John Henry. I would sing the baby songs, “B-I-N-G-O,” “Twinkle Twinkle Little Star,” and others that don’t require any velocity, and he didn’t seem to mind. But if a song or my voice held any hint of poignancy or hit that mid-belt place, it was too much for him, so I was careful not to forget myself and break into song, as I had been wont to do for as long as I could remember. It was heartbreaking because I knew it wasn’t about volume or pitch. It was about his becoming overwhelmed by the way my singing made him feel. If a human face is the hardest thing in the world to look at because it is so complicated and holds so much information, then the human voice must be the hardest thing to hear and make sense of for the same reasons. It all made me turn quiet. I felt disconnected from him, and as if we had lost a way to bond.
I feared John Henry might shy away from music for his entire life. I couldn’t imagine what that would be like for a person, let alone one who was born into the family like mine; I didn’t know and couldn’t imagine an existence without it. I struggled with his struggle. I worried about what his father and I had passed on to him. Could it have been our faults that he was so sensitive to music? I thought it exceptionally cruel that the son of two people whom it had blessed so richly was so plowed over by it. Music above all else has always given John Henry’s father and me pathways with which to connect to the world. It has, in different ways, been a savior to us both. What we cannot say we can sing. The irony of it all wasn’t lost on me.
But as I grew used to the idea that my son was very likely going to walk through this life with a different filter than most, I slowly came around to the idea that he had a gift. I began to see that he didn’t have a lack of ability or love for music at all. Instead, he was hyper-tuned in and on by it. John Henry has a great sensitivity—it’s almost as if he is missing a layer of protection against the onslaught of information the world can throw at you—but he slowly strengthened himself and continues to do so. I will always remember the day that I forgot to skip “The Cow Song” on his Classical Baby DVD (Puccini’s “O mio babbino caro”) and he stood in front of the television not just enthralled but also seemingly determined not to cry. He made it through the song without shedding a tear for the first time. I can’t say the same for myself when I discovered him watching it.
My son has taught me countless lessons, but the biggest one may be that there is music in everything.
What followed in the next years was John Henry’s unmistakable gravitation toward music instead of away from it, and today it’s his greatest motivator. As we learn sign language together, the sign for music is one that I can always count on him to remember. He has no functional verbal language yet, but he sings to himself in what sounds to me like awfully good pitch. He strums his ukulele and plays the drums. He has rhythm, and its patterns seem to organize and regulate him. He likes Justin Bieber, OKGo, Hoagy Carmichael, and Mozart. And to my great relief, he tolerates and shows signs of liking heartfelt singing, even his Mama’s.
What he once couldn’t process at all now gets him through rough spots. If he becomes frustrated or upset, I turn to music to soothe him. These days, it’s one of the only things that can make him stop crying. If I want him to pay attention to me, I sing to him. We play records in the house and practice silly dances. What I know now that I didn’t know on that August 2011 afternoon is that because his antenna is set so high, he can feel music deeply. It moves him. And it does connect him to the world outside of his mind, though I don’t understand exactly how yet. I often find myself wondering what it is that he hears as he turns his head toward a tree when the wind rustles its leaves, or when he notices a formation of birds flying overhead, and he smiles. I suspect he hears music all around him because he stops what he’s doing and he listens. My son has taught me countless lessons, but the biggest one may be that there is music in everything. I don’t know what role it will ultimately play in his life, whether he will pursue it professionally or if he will just enjoy it. The years to come will answer that question. I only know that music might very well be his language in some way. What he cannot say he might one day sing, too.
Allison Moorer is an MFA Candidate in non-fiction at The New School. She is a music industry veteran and has been nominated for Academy, Grammy, Americana Association, and Academy of Country Music Awards. Her non-fiction has appeared in Performing Songwriter Magazine, GoodMenProject.com, vainstylemag.com, and innocentwords.com. She lives with her son, John Henry, in New York City.