• November 1, 2014

Little Boy Lost

Little Boy Lost 1

Photograph courtesy of the author

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Photograph courtesy of the author

I feel like I'm getting a second doctorate. My first one was in English—I am a scholar of 19th-century British literature—but in the past six months, I have been boning up on subjects entirely alien to my thought processes: neurobiology, biochemistry, genetics, behaviorism, psychiatry, audiology, speech-language pathology, nutrition, and occupational therapy. I feel at times as though I am living a scholar's nightmare—you know the one, where you are back in graduate school and have just realized that your oral examination is next week but you have not studied at all. I wake up from anxiety dreams into an even worse reality, scrambling, confused, and nagged by the conviction that no matter how much studying I do, I will always be unprepared. But the stakes are so much higher now. This time I am not studying to get a Ph.D., but fighting for my son's life.

Part of being a scholar with a son on the autism spectrum involves cobbling together a reading list as comprehensive as any orals. That's the way I have been trained to deal with problems: I research them. In the six months before getting an official diagnosis from a developmental pediatrician at the Albert Einstein College of Medicine, in the Bronx (Einstein may have been on the spectrum himself), my reading list included the following:

A Work in Progress: Behavior Management Strategies and a Curriculum for Intensive Behavioral Treatment of Autism; The Out-of-Sync Child: Recognizing and Coping With Sensory Processing Disorder; The Out-of-Sync Child Has Fun: Activities for Kids With Sensory Processing Disorder; Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think; Early Intervention Games: Fun, Joyful Ways to Develop Social and Motor Skills in Children With Autism Spectrum or Sensory Processing Disorders; Behavioral Intervention for Young Children With Autism: A Manual for Parents and Professionals; Raising a Sensory-Smart Child: The Definitive Handbook for Helping Your Child With Sensory Processing Issues; Somebody Somewhere: Breaking Free From the World of Autism; Nobody Nowhere: The Remarkable Biography of an Autistic Girl; Starting Sensory Integration Therapy; 101 Games and Activities for Children With Autism, Asperger's, and Sensory Processing Disorders; Autism Recovery Manual of Skills and Drills; Sensational Kids: Hope and Help for Children With Sensory Processing Disorders; Thinking in Pictures: My Life With Autism; Emergence: Labeled Autistic; Relationship Development Intervention With Young Children: Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD, and NLD; Empty Fortress: Infantile Autism and the Birth of the Self; The Affect-Based Language Curriculum; Exemplary Practices for Beginning Communicators: Implications for AAC; PECS: The Picture-Exchange Communication System Training Manual; Right From the Start: Behavioral Intervention for Young Children With Autism; Writers on the Spectrum: How Autism and Asperger Syndrome Have Influenced Literary Writing; ICDL: Clinical Practice Guidelines; Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child; The First Year: Autism Spectrum Disorders: An Essential Guide for the Newly Diagnosed Child; Exploring the Spectrum of Autism and Pervasive Developmental Disorders: Intervention Strategies; Autism: A Sensorimotor Approach to Management; The Way I See It: A Personal Look at Autism and Asperger's; The Child With Special Needs: Encouraging Emotional and Intellectual Growth; The Verbal Behavior Approach: How to Teach Children With Autism and Related Disorders; Child of Mine: Feeding With Love and Good Sense; Excitotoxins: The Taste That Kills; Food Chaining: The Proven 6-Step Plan to Stop Picky Eating, Solve Feeding Problems, and Expand Your Child's Diet; The Autism and ADHD Diet; Diet Intervention and Autism; Just Take a Bite; Encyclopedia of Dietary Interventions; The Kid-Friendly ADHD and Autism Cookbook; Dietary Interventions for Autism Spectrum Disorders; Childhood Autism: A Clinician's Guide to Early Diagnosis and Integrated Treatment; Lesson Ideas and Activities for Young Children With Autism and Related Special Needs; and the recent memoir by a fellow Romantic scholar, The Anti-Romantic Child: A Story of Unexpected Joy.

But I don't know if I will pass my examination this time. I certainly won't pass with distinction. I have trouble remembering most of what I read, much less applying it to the eight 30-minute sessions of home therapy I am trying to do with my 2-year-old son. I confess that there are many times I end up staring into space in despair for a half-hour as he "perseverates" (the technical term for his obsessive focus) with Goodnight Moon or a musical toy. I keep reading about how the brain is the most plastic in the first three years; I have a year left. But though I have read enough to fill several semesters of coursework, most of the time I still feel as if I am in the dark.

All of this made me even more grateful to come across Priscilla Gilman's memoir, The Anti-Romantic Child (Harper, 2011), a moving account of a woman's attempts to juggle academia, parenthood, and treatments for a disabled child. Here, perhaps, was a road map. She was a Romantic scholar with an autism-spectrum kid and had to tackle many of the same issues that I had to face—unmapped territory for a memoir. In many ways, however, I was envious of her. Her son was preternaturally verbal; mine is nonverbal. She gave up a tenure-track job; I am a lecturer. But we both were haunted by the discrepancy between our Romantic visions of childhood and the reality of parenting a special-needs child, and I am likewise considering taking time off teaching to save my son.

By any measure, Gilman hit the academic jackpot. Before she even finished a Ph.D. in English from Yale, she nabbed a tenure-track job there. After a few years on the tenure track at a place notorious for firing even its most ambitious junior faculty, she was hired by Vassar. But it turned out that while Gilman loved books, especially poetry and most of all Wordsworth, her older son's developmental disorder pulled all of her attention to what was really important—not landing an article in PMLA, or a book with the most fashionable university press, but following this little person who tested her Romantic notions of childhood, of learning, of cognition, of literature itself. I could definitely identify. At times when my days have been the most difficult, I have thought of this quotation from Lord Byron—and found little solace in it: "Sorrow is knowledge, those that know the most must mourn the deepest, the tree of knowledge is not the tree of life."

At one point, little Benj seems to be an English professor's dream, memorizing poetry at an absurdly young age. Gilman's later realization that this is a symptom of hyperlexia—a disorder that includes an early ability to read and memorize but a delayed ability to have an actual conversation—threw nearly everything into doubt. As her marriage was unraveling, she cast aside her academic career in her quest to find answers to her son's unexpected behaviors, all the while continually taunted by Wordsworth, whose "Intimations of Immortality" seemed less a prophecy than a mythology for some other kid. There are mountains of close readings of Wordsworth's The Prelude, but never a book that shows, movingly and often painfully, how reading Wordsworth can prepare you for having a child with a developmental disorder.

I know from my own experience how true this is. There is something about being an English professor—especially a scholar of Romanticism—that can set up unreal expectations for parenthood. It was the Romantics, after all, who invented the secular cult of the child. Coleridge wrote of his son Hartley as "A little child, a limber elf, / Singing, dancing to itself / A fairy thing with red round cheeks, / That always finds, and never seeks," able to gambol in the mysterium that eluded his father. To Wordsworth, The Child was a natural poet and instinctive actor, constantly conning new roles and mimicking adults, "As if his whole vocation / Were endless imitation."

When I was expecting my son, I kept thinking about my own childhood paracosm with my brother and how I hoped to replicate this imaginary world for my child. I imagined him one part Hartley and one part young Wordsworth, finding without seeking and reminding me how essential play is to being human. For Aristotle, man is the mimetic animal, and "the instinct for imitation is inherent in man from his earliest days; he differs from other animals in that he is the most imitative of all creatures, and he learns his earliest lessons by imitation."

Except when he doesn't. What do we make of children who do not know how to play, or people who cannot learn by imitation? Autistic children have difficulty with mimesis and imaginative play. According to the U.S. Centers for Disease Control and Prevention, one in 110 children (and one in 70 boys) in the United States are diagnosed with the disorder, a 600-percent increase over the past two decades. This alarming trend is forcing us to redefine childhood, mimesis, and what it means to be human. How will our schools accommodate this influx of children born on the spectrum? In what ways will autism-spectrum disorders force us to redefine intelligence? When will neurotypical begin to be phased out by the neurodiverse? And why is this happening?

Researchers have cited genetic, environmental, allergenic, or epidemical factors as possible causes, but no one really knows. It is happening because couples are having children later; because we live in a toxic world; because we have immunized our children, or not immunized them enough, or exposed them to too many allergens, or fed them caseins and glutens and a diet of computers and electronic diversions, or had them too early or too late, or who knows. For a Romanticist like me, trained to look to children for the answers, I did not expect to have to answer for my son's unromantic childhood.

Many writers on the subject of nonverbal autism talk about how caretakers often become uncannily able to read the child's signs that are invisible to outsiders. The occupational therapist working with my son has said that his gestures are so tentative that they look like a mere shadow or the slightest of quivers. Since his infancy, I have become adept at distinguishing his cry for milk and his cry for juice, his cracker whine and his Cheerios whine, the hand pressure indicating that he wants another round of Good Night, Gorilla and the one that tells me he wants me merely to hold him as he turns the pages and murmurs indistinctly in his throat as he pretends to read the words to himself. I find myself translating, explaining, speaking for my son to everyone except his nanny, who has known him since he was four months old.

Memoirs on autism also frequently mention the parents' distress at seeing the spark gradually go out of the eyes of their child as language skills regress and he or she retreats into a self-enclosed world—the dreaded prison of autos, the root meaning of autism.

We took my son on a pilgrimage to the Bronx for an evaluation three months after he had a frightening regression in March. He had been receiving early-intervention services for three months and was improving, and then the light in his eyes began to go out. He stopped looking in my eyes, and when I caught his chin in my hand to look in his face, there was nothing there. He was irritable and spun in circles most of the time, and when he did sit down, he kept pushing the same button on a musical toy over and over and couldn't be engaged. He didn't even like his beloved books anymore. My son was gone—there was no spark in his face, no sign of life, just dead eyes.

The worst part was that I knew he sensed it, too. In the same way that I know when he wants vegetable puffs or puréed fruit by the subtle pitch of his cries, I could tell that he also perceived the change—and feared it. At night he was terrified to go to bed, needing to hold my fingers with one hand and touch my face with the other in order to get the few hours of sleep he managed. Every morning he was different. Another word was gone, another moment of eye contact was lost. He began to cry in a way that was untranslatable. The wails were not meant as messages to be decoded; they were terrified expressions of being beyond expression itself.

The parent of one child whose skills disintegrated when she was 3 recalls his little girl waking up in the middle of the night screaming, "Daddy, can't talk, can't talk!"—and she never spoke again. I thought of this when I heard Julian cry in that way; it was the sound of terror from the edge of the abyss. Every night when his wailing stopped I cried and thought to myself, I am losing him. He is losing himself. And we both know it.

"And if you're lost enough to find yourself," Robert Frost writes in "Directive," "pull in your ladder road behind you / And put a sign up CLOSED to all but me." Frost looks for an escape "out of all this now too much for us" in a vision of a rustic goblet stolen from the children's playhouse, something which can be found only if you know how to get lost in play. But parenting a child on the autism spectrum, you are forced to reverse these roles. You are the one who must entice the child out of his or her perseverative routines; you must be the guide who takes the roundabout route to getting lost so you may both "Drink and be whole again beyond confusion."

After a month of intensive therapy and dietary changes (involving the removal of glutamate and hydrolyzed proteins and protein isolates), my son began to come back to me. He is about a year behind in development, but improving daily. "Better" for us, however, still means the autism spectrum. Mimetic skills continue to be a problem, and what is play for most kids is work for us. I did, however, end up creating a paracosm for my son, though it has become a metaphor for his being trapped in a sensory mire. As an escape from my terror at what was happening, I became inexplicably fascinated with bog people when my son began receiving early-intervention services, and, as evidence of my bonkers state, at night I sewed him imaginary bog friends to live in a fabric bog. They include Bog Boy, who is shy and afraid of loud noises and smells and general above-ground life (as many with sensory-processing disorder are); a little girl named Moy who comes to visit him and give him gifts introducing him to aspects of nonbog world; a frolicking Bog Frog; Peat, a friendly clump of sphagnum moss; and, of course, Bad Boy Grog, who messes everything up. My son does not play with them yet, but sometimes, before bed, he lets me read him the board book I made about them. It begins: "Bog Boy lived in an Irish Bog / With his good friend, Peat, and a Bad Boy Grog / In the far old country of County Clare / Where dwelt a Shadow (without any hair)." He particularly likes the photograph of Bog Boy clapping gleefully when he finally manages to talk. I hope that will be my son one day.

Mostly, I am still scrambling. I spend my "free" time scheduling appointments: occupational therapy, speech therapy, special-needs teacher sessions, and play groups, grimly thinking all the time that the care he gets now will determine whether or not my son goes to a special-needs school or mainstreams into kindergarten, whether he will need lifelong managed care or perhaps someday be able to hold down a job and maybe even have a significant other. I also hound specialists (mostly unsuccessfully): autism-spectrum-trained optometrists, dentists, pediatric neurologists, geneticists, Floortime trainers, ABA therapists, PECS experts, Prompt practitioners, a metabolic expert. I am beginning to learn the lingo. I can rattle off an impressive string of acronyms on subjects I'd never dreamed of studying. At times I think I could probably fake my way through a comprehensive exam. But the final test is yet to come.

My son, meanwhile, has always been adamant about thriving in spite of everything. His developmental pediatrician calls him "self-directed." My son knows what he wants. He wants to exist, to thrive, to grow, to groove to music and read books, to dance to his shadow, to jump for joy, to fling crayons during Beatles choruses, to swing for hours, to explore plants, to run to the park, to go on adventures in the car, to hear silly sounds, to try to put fallen bark back on trees. And like most 2-year olds, what he seems to want above all is love, attention, wonder, and new experiences. Those, at least, I can try to give him.

"The difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low-functioning means your assets are ignored," writes Laura Tisoncik, a member of an "autistic liberation front" neurodiversity group. What I believe of my son may determine what he becomes.

I take comfort in the research of Temple Grandin, animal scientist, best-selling author, subject of an Emmy- and Golden Globe-winning HBO biopic, and one of the most famously high-functioning autistics. She points out that not only do most people "equate intelligence with language" and erroneously believe that nonverbal individuals "have reduced or limited cognitive ability," but also that the very testing instruments used to measure IQ "are largely ill-suited to this population." Because some children with autism-spectrum disorder can't talk, we assume they have "nothing to say," and "this sets up a vicious cycle: We expect less from these kids, so they receive fewer opportunities to learn. We don't challenge them to learn, because we've already decided they can't. ... It's their bodies that don't work, not their minds."

Albert Einstein, Charles Darwin, Isaac Newton, Nikola Tesla, Michelangelo, Glenn Gould, Andy Warhol, Jonathan Swift, W.B. Yeats, George Orwell, Lewis Carroll, Herman Melville, and Emily Dickinson all may have been on the autism spectrum. If that is true, our son is in good company. Hans Asperger, who gave his name to one disorder on the autism spectrum, wrote: "For success in science and art, a dash of autism is essential." Perhaps that is true. Perhaps what appear as oddities in my son are evidence of a complex mind expressing itself.

For example, he seems to have perfect pitch, playing toddler harmonies along with my husband for a minute here and there, composing impromptu melodies on his tiny toy piano, selecting crayons to accompany certain notes (though he does not yet draw with them—he synesthetically rubs them on his feet in time to the music). He understands much more than his dyspraxia (a motor-planning problem) would lead others to believe; I imagine he understands everything.

My son is attuned to texture, studies vegetation with a delicate touch worthy of Shelley's "Sensitive Plant," and pores over books for hours, sometimes putting his hand to my lips when he wants me to read them aloud.

And so I look for hopeful signs and hints of genius as I educate myself on his disorder and make order out of seeming chaos. He is an artist, I tell myself; he is a Wordsworthian lover of nature, a natural poet. And ironically, this re-romanticizing of my anti-Romantic child may be what ends up saving him. With this in mind, I have made him a little T-shirt with a quotation from Keats: "Axioms in philosophy are not axioms until they are proved upon our pulses." I never understood that so well until my son proved it upon mine.

Amy Leal teaches in the English department at Syracuse University and is working on a book about John Keats.

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