A Singer Lends Her Voice to a Conversation About Autism – The New York Times

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A Memoir of Learning How to Listen
By Allison Moorer
Allison Moorer opens her new memoir, “I Dream He Talks to Me,” with a letter to her nonverbal autistic son, John Henry. The Grammy-nominated singer-songwriter writes, “I wasn’t sure how you would feel about me telling people these things about us, so I wrote every word here imagining you were reading each one over my shoulder.”
In doing so, Moorer touches on a question that’s been gaining traction in certain circles: Is it ethical to write about your children, especially if those children are disabled and unable to give consent? Some argue that autistic stories should be written by autistic people, that parents have dominated the conversation long enough. But what about the profoundly autistic, those without the means — expressive or intellectual — to tell their own stories? If we silence the parents of such children, who will tell these stories? In “I Dream He Talks to Me,” Allison Moorer proves that this can be done with respect.
Moorer was in the middle of a song when she first realized her son is different. She hit a high note in a gospel hymn and her toddler broke into tears, overwhelmed by the sensation. She connected the dots: He had been using fewer words, had stopped turning his head toward anyone who said his name. A few months later, John Henry was diagnosed with autism.
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Like many parents faced with uncertainty, Moorer sought medical guidance, read books, tried diets and continues therapies — anything that might help her son regain his language. Her experience was complicated by her divorce from John Henry’s father, the musician Steve Earle.
Moorer grapples with how she can be a good mother, given her limited ability to understand John Henry and his disorder. At one point, a doorman in her building looks at 6-year-old John Henry and says, “He will be fine by the time he is 12, 13.” She ponders the meaning behind that benign, well-intentioned statement: “Where is the line between fine and not fine and who decides where it lies?”
Moorer shows how caring for someone with profound disability can be a relationship defined by duality. You can at once love your child and respect their unique outlook while wishing they had an easier life, one where they could express themselves and even live independently.
She writes, “I’d love for him to be able to sit and turn a block between his hands all day every day because that seemed to be what made him feel good.” But, unfortunately, this is “not a world of block turners and I was going to have to do my best to get him off of block-turner island.”
Then there’s caring for a child who pulls hair and head-butts, as John Henry does. “We’re told to get away from those who hurt us, but I can’t, nor do I want to, run away from this person,” Moorer writes. Though she doesn’t explore it here, her father killed her mother before killing himself, a tragedy she wrote about in her first memoir, “Blood.”
Some parts of this book are written directly to John Henry, including the descriptions of the dreams that give the book its title. Others are written to the strangers who stare at him, “Dear Woman in the Yes-I-Know-It’s-a-Women’s-Locker-Room.” Others are written like a guidebook for parents who find themselves wandering this unfamiliar land, including “Grow elephant-sized balls.”
At times, these shifts give the memoir a disjointed aspect.
Nevertheless, Moorer brings shape and voice to what it means to love and support someone you may never understand: After all, “there’s no worse helplessness than the kind a parent feels when they can’t fix things for their child.” Moorer demonstrates the power in surrender — and the importance of asking the right questions: “Where is the line between enough and too much? Between what he needs and what we want, between helping and hurting, between just enough and diminishing returns?”
It’s impossible to know whether John Henry approved of his mother’s story or whether he’ll ever be able to read it. But in this heartfelt book, Moorer delivers a resounding tribute to his powerful impact on her life.
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