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Kristina Chew

Kristina Chew has been a powerful and steady presence in the autism blogging world for many years. Today, she writes about her essay, “The Wages of Autism”, weaving in themes of love, language, and life with Charlie with those from her work as a classics professor.

A couple of posts from my blog Autismland were revised to create my essay “The Wages of Autism.” All the posts—”Autism Hearts Club,” “Ache,” The Wages of Autism”—touched on similar themes of love, loss, and bittersweet, as conveyed through snippets of life with Charlie, especially those concerning Charlie’s communication and language.

Talking and words have always bedeviled Charlie. He learned to round his lips and pull his tongue and move his teeth to form each vowel sound, each consonant (initial and final—the latter were far harder), one by one. He was nearly 8 years old when he was could form most of the sounds of American English (not that he could always do so on command). Charlie’s words being so few, each one seems a precious coin. New ones heard for the first time—”taco,” Charlie said just a few days ago—equal larger denominations. Indeed, as I wrote in The Wages of Autism,

The exchange rate in Autismland is more than a bit lopsided. To make these quick currency conversions into Charlie-pence (or kronas, or euros, or rupees, or ren min bi), I have had to take several crash courses in a strange and curious economics, a mathematics in which I’m not always sure a point isn’t a line or a curve…

Yes, it was years and years and years of therapy and school and practicing and a few other ingredients (bike-riding, I suspect) that helped Charlie “have words.”

Like many parents, Jim and I seem forever to find ourselves having to pay off something or other. And yes indeed, while the exchange rate can get pretty high, the payoff is always worth it: This was the theme of “The Wages of Autism,” and a theme running through my writing about Charlie all the time.

Nevertheless, I have to confess, I kept forgetting that I’d titled my essay “The Wages of Autism.” Up until I saw my essay in the book Kyra and Vicki so lovingly put together, I thought I’d called my essay “Autism Fragments.”  This was the title of another old blog post that compared reading a fragment of the ancient poet Sappho of Lesbos with understanding, “translating” Charlie’s language, both verbal and non-verbal.

To read those three words of Sappho, I need my big Greek dictionary, a couple of commentaries, several translations, a few books and essays about Sappho–the same amount of reference materials and resources I need to read Charlie, not to mention a home ABA therapy team, Charlie’s teachers and school behaviorist, two SLPs, our VB therapist.

“Fragments”: Little bits of things, parts and pieces. “Fragments” can describe Charlie’s words, his language that provides just the very crystalline tip of the iceberg of what he’s striving to express. “Fragments,” you could say, are what you get from those wages of autism, little bobs and bits.

So little, for so great an effort, some might say.

But just as, to a classical philologist, a shred of papyrus from the sands of Egypt with a few words from a poem of Sappho is sufficient to spawn a career-making article in a peer-reviewed journal, so a couple of words from Charlie make long labors and long, long days not simply bearable, but warm and bright and rich.

What seems like fragments, broken things, to some, are—thanks to all we’ve lived through with Charlie—jewels we treasure, and keep close to our hearts.



Kristina Chew is an Associate Professor of Classics at Saint Peter’s College in Jersey City, New Jersey. She is writing a book (working title: We Go with Him) about autism, language, and translation; has published a number of articles about literature about autism, disabilities studies, and literature; and has made numerous presentations about advocacy, teaching college students who have ASDs, and literature about autism. From 2006-2009 she wrote two widely-read blogs about autism, Autism Vox and the autism blog at Change.org; she now writes daily about life with Charlie on her current blog, We Go With Him. She has also published a translation of Virgil’s Georgics (2002) and written about classics and multiculturalism. Her son, Charlie, was born in 1997.

Bruce Mills

The essay, “Flood Plain” by Bruce Mills is taken from his memoir, An Archaeology of Yearning, a book that “explores memory, story, and desire in a home transformed by autism.”  In this entry, Bruce moves us in and out of his own boyhood memories as he moves through his routines with his four-year old son Jacob:

At the end of the week, I again arrive shortly after mid-day to pick up Jacob from Croyden. I sit upon the bench along a wall in the front lobby and lean back against the red brick. Children are arriving for the afternoon. I hear the whir of the elevator of the first bus. From its side emerges a young girl in a wheelchair. Her head tilts against the sparkling plastic head cushion. Her smile unsettles me. She is glancing somewhere where I am not, but I sit up, eager to greet her at the door. I am learning to look into her eyes.

Outside a few flakes of snow begin to suggest themselves, lingering like the descending ash of the burnings of late fall. As I try to make out the snow from the gray sky, another memory urges itself forward. I am twelve and on my Stingray bicycle pedaling through an empty street to a 6:30 a.m. basketball practice. It is mid December. A night snow has covered the street with a blanket of white; except for the shadows cast by the intervals of streetlights and the predictable angles of houses and sidewalks, the landscape has few boundaries. For a moment, I close my eyes and ride blind, until, feeling the thrill of pedaling just beyond some imaginary limit, I stop to look over my shoulder. Behind me, the wandering indentations of my tires, like the frozen paths of small streams, fill with snow, the more distant banks diminished to thin creases of shadow. The street stretches forth like a flood plain fertile with the meanderings of past river channels. It is a world that I had not seen, and so I let myself linger in the space between past and present, this borderless landscape of beauty and loss.

More buses and cars move up to the curb. A few parents enter with their sons or daughters. One child catches my eye; he seems older than the others. After the boy leaves to go down the stairs to his classroom, his mother takes a seat on the other end of my bench. When our eyes meet, I introduce myself and am about to tell her about Jacob just as she is called into the office to talk with the school psychologist. She hesitates a moment, and I sense that she does not want to do the unkindness of not hearing about my son. But I glance toward the office to divert her eyes and assure her. “Perhaps another time,” I say.

After she goes, I can feel the vibrations of my son’s unuttered name on my tongue and the way my lungs had filled to hold the beginnings of an unformed tale. For a moment, I see myself through her eyes—an eager father whose son now plays in a place previously unimagined and who pauses on the threshold between a world just opening up and another seemingly canceled out. I glimpse with sadness the distinct outlines of that person that Jacob has begun to erase.

(The essay continues in the book.)

It’s true that parenthood changes us and even more true when we are parenting children on the spectrum because we are brought into a world that is not typical, not what we imagined or expected. There are difficulties and frustrations, yes, but as Bruce writes beautifully in this glimpse of life with Jacob almost fourteen years after the time of Flood Plain, “we know this immense love that comes from living so intensely together amid our different ways of knowing.”

In the other room, I hear Jacob sorting through his videos.  It is early Sunday morning, my wife Mary is away to be help with her brother’s recovery from surgery, and I have let Jacob break the 8 am rule by having “TV freetime” earlier on Sunday.  My daughter is sleeping in the other room, getting the last home rest of spring break before heading back to the University of Michigan.  In a couple hours, we will frantically gather all her washed clothes, negotiate with Jacob about his necessities for the trip, and drive her back to Ann Arbor.

As I let our dog, Gypsy, out for the morning, I note that last night, my daughter Sarah must have slipped Jacob’s many, many videos back in their boxes and gathered and stacked his many, many drawings, lists, and print-outs of Disney or Universal characters.  In the kitchen, the counter is clear of the dirty dishes—which she loaded into the dishwasher some time in the early hours of Sunday morning.  As I write, I feel that twinge of already missing her, of feeling that I did not have enough time to visit with her over the last two days when Mary was gone.  Last night, after watching Jacob’s Mary Kate and Ashley movie, we started Wall-E, but I could not stay awake.  To say that I have learned to accommodate this sense of sadness over the years is not to say that I feel it less.

Jacob will be eighteen in one week.  Much has changed since the Croyden days.  He is a junior in high school, developing work skills, going to Art and Computer classes, participating in gym, and always looking forward to Common Bond events, the program that helps foster friendships with neurotypical peers.

Much has not changed.  The frustrations are different but, at times, still worked out physically.  My son is now two hundred twenty pounds.  Mary and I literally absorb his inability to apply the right “coping skills” for an unexpected change (like a snow day that cancels a Common Bond excursion).  We now have new strategies for how to provide space; we bring Gypsy with us to the garage and sit without speaking in our car.

And we know this immense love that comes from living so intensely together amid our different ways of knowing.  In this story that is our lives, after all, there are many ways that we are touched.  Last night, when taking Gypsy out for a walk, Jacob put his hand on my shoulder.  It was a kind of tether, a cord that enabled him to walk while still looking at his “papers” beneath the intersecting glow of the street lights.  But, in the end, I felt that he was the one leading me home.


Bruce Mills teaches literature at Kalamazoo College. In his field, he has authored two books, including, most recently, Poe, Fuller, and the Mesmeric Arts: Transition States in the American Renaissance (2005). In the last few years, he has turned to creative nonfiction, which has been published in The Georgia Review and New England Review. He and Deb Cumberland of Winona State University have co-edited a book on siblings and autism to be published by Jessica Kingsley Press in the fall.

Bruce is active in his local autism society and presently serves as a board member on The Gray Center for Social Learning and Understanding. He lives in Kalamazoo, Michigan, with his wife, Mary Holtapp, daughter Sarah, and son Jacob.

Mary McLaughlin

No matter where our child falls on the spectrum, every one of us can identify with Mary McLaughlin’s gorgeous metaphor in her essay, “Live via Satellite: A Parenting Journey.”

We all circle within our children’s orbits, sometimes closer, sometimes farther away, our antennas tuned to their shifting needs:

At times, I’m a communications satellite, waiting for Bud
to transmit messages through space to me so that I can bounce them
to the people who need to receive them. I was called into action recently
at Dunkin’ Donuts, when Bud marched to the counter, looked
the clerk square in the face, and announced in a booming script from
an Oswald cartoon, “I would like a salmon sorbet, please!”

The clerk smiled nervously and shifted her questioning gaze to me.

I smiled back and clarified, “He’d like a jelly munchkin and a
chocolate munchkin, please.”

Message transmitted, and received.

Sometimes the job is not as much fun. One summer, Bud developed
acute anxiety about thunderstorms and started to panic when
dark clouds gathered. I assumed the role of weather satellite, scanning
the skies for signs of inclement weather, calculating the timing,
the duration, and the severity of any potential precipitation, and
planning our days accordingly.

At other times, Bud’s anxieties require me to become a defense
satellite, watching vigilantly for potential threats on his horizon—a
barking dog, a shrieking baby, a peer who demands too much, an
adult who invades his personal space—and deflecting them before
they are able to make contact or do damage.

In easier times, I am an entertainment satellite, beaming in the
diversions that I know will bring Bud delight—a summer trip to
the ocean to plunge into the icy waves; an afternoon in winter spent
making snow angels. I’ve learned to transmit the characters and
dialogues he loves most, to help his scripted echolalia transform
from isolating monologue to connected conversation, as I become
Bert to his Ernie, Minnie to his Mickey, or The Man with the Yellow
Hat to his Curious George.

Most of the time, though, I’m a more natural satellite: a moon.
My phases coordinate with Bud’s as I help him regulate the tidal
ebbs and flows of his engagement with the world. Sometimes, I loom
large on his horizon, a visible, tangible presence, illuminating the
things that surround him: “Look, Bud. See this. Do this. Care about
this.” Other times, I fade into the background, a faraway sliver whose
influence is barely perceptible as Bud steps forward, makes his own
decisions, and prepares to launch.

(The essay continues in the book.)

As I read Mary’s update, I wondered about my own To Do list which, not surprisingly, looks identical save a change in the main character’s name:  1) Fluffy and 2) Everything else. How much has it changed over the years? Some. Some. We both still need more satellites. I think we all do.

Mary writes:

In his foreword to Gravity Pulls You In, John Elder Robison writes of the essays in it, ”One thing strikes me in almost every story. Autism has taken over the lives of these people.”  His observation resonates with me; it’s the same thing I thought about myself as I re-read this essay – an essay I wrote three years ago.

An interesting reality in writing about parenting is that each discrete piece of writing captures a single moment in time.  Even a piece that describes events that happened over several years is, by definition, written by a parent in a particular life space raising a child in a particular life space, and the writing – no matter what its content – reflects those realities.

As I re-read this essay now, I see how well I captured the life space I occupied three years ago – a space in which, I see only in retrospect, I was single-minded in purpose.  In those days, there were just two items on my “to do” list:  1) Bud and 2) Everything Else.  And I never really got to that second item on the list.

But time changes everything.

Shortly after I wrote this essay about Bud’s orbit through space and my life in revolution around him, our life space changed.  Bud and I hit a series of asteroid belts and I suddenly lost my single-minded focus.  To be honest, I’m not really sure how it happened:  Did I lose my focus, which sent us careening into asteroid belts? Or did the asteroids shower down on us, shattering my focus in a hundred different directions?  All I know is that there were times when I felt like I’d lost our orbit completely – times when the space around us was so thick with asteroids, Bud and I seemed to lose sight of each other.  I knew that we were still connected, but sometimes, when we caught glimpses of each other through the barrage of falling debris, I’m not sure that we always looked familiar.

Three years and several asteroid belts later, we have emerged, pock-marked and battle-scarred, but whole, into another new space, in which we are once again aligned and in sync.  But now, in this new space, my “to do” list is lengthy.  Bud still occupies the top spot, but there are a lot more things that get done.

What’s even more interesting is that, in this new space, I am able to see how many other satellites Bud has around him.  I can see how those other satellites fill the void when my attention is elsewhere.  I can see that sometimes those other satellites are even more effective than I am at giving Bud the support and direction that he needs.

I can also see, in this new space, how many satellites I have in orbit around me – providing me all the same things that I have tried to provide to Bud.

And I can see how Bud himself has become a satellite, as he falls into orbit around his grandfather, whose challenges increase with his age.  I watch as my son becomes the object in my father’s sky that orients him and becomes his point of reference, illuminating his life as nothing else can.

I still love my role as Bud’s satellite, but I also love all of the other satellites that have emerged in our lives.

Or maybe those other satellites were there all along.  Maybe I just needed some time amid the asteroids to really help me see them.


Mary McLaughlin has carved out a space in small-town New Hampshire, where she works in student affairs and teaches writing at Colby-Sawyer College, and in the blogosphere at MOM-Not-Otherwise-Specified.


Carolyn Walker

Every piece in Gravity has nuggets of wisdom, sentences and phrases I could carry in my back pocket, words to live by, words that confer clarity, courage.

Carolyn Walker’s essay “Evolution of a Fairy” has many such nuggets. This one popped out at me this morning: ”When it is impossible for a child to change, a mother must, I discovered. It is the only way to keep the heart whole.”

From “Evolution of a Fairy”:

I have felt the lure of fairies, and all the implications of that word, for most of Christian’s life. By the time he was a toddler, it was easy to observe his tendencies—to hear his slight lisp, see the lilt in his walk and the way he floated his hands. What was much better hidden was his Asperger syndrome: That quirky little part of him that cannot . . . well, that cannot discern the quirky little part of him. Even as he enters adulthood, he asks me as he has so many times in the past, “What is it, Mom? What do people see in me? I don’t get it.”

The I-don’t-get-its have presented some particularly devilish conundrums for my son. When he was a child, he didn’t get why other boys wanted to play street hockey or football when he wanted to draw big red lips on the driveway, over and over. And when he was a teenager he didn’t get why it was just a little weird for him to want to trick-or-treat as an Egyptian goddess.

Later, when he was twenty, in the incident that most unnerved me, he didn’t get why it wasn’t okay for him to chase after the man who mugged him . . . his one-hundred-and-five pounds of skin and bones motivating themselves across a parking lot and up a street, in the bitter cold, in his shirtsleeves, on New Year’s Eve, at three in the morning.

“I’ve had it, Mom,” he told me the day after the mugging, right after he burst through the front door, broken necklace in hand, jolting me out of my reading material with, “Well, your worst fears have come true.” He sliced his hand through the air to emphasize his point. “I’ve had it. I decided that I wasn’t leaving until I got my money and my necklace back. I’m done being a victim.”

In Christian’s reality, he has been on the receiving end of more taunting and harassment than any human being should have to bear, his androgynous Aspie persona having for years presented itself as something impossibly confounding to members of the public. On New Year’s Eve he had reached his threshold. The fact that his perpetrator might have had a gun or a knife or a gang of thugs waiting in the shadows did not concern him. In fact, he seemed renewed, empowered by his own actions as he reported them to me. I watched while he sat more erect, more confident. I watched his eyes transform into beads under his scowl.

(The essay continues in the book.)


Carolyn update is especially heartening to me as the mother of an aspie boy who is one of the great questioners of the century:


When my son Christian was a small boy, long before I learned he has Asperger’s syndrome, he would regale me with questions. Hundreds of them, which I began writing down and using for fodder in my newspaper column. For this mother-cum-journalist, his questions were manna from heaven. Cramming a tight deadline into my busy life, I knew that, with his imagination prodding mine on a daily basis, I would never be at a loss for ideas – something that is an ever-present worry for most columnists.

A lot of his questions were funny, as well as being testimonies to the fact that he had a hugely optimistic faith in my wealth of knowledge. He put me on the spot with things like, “Do you know how many skin cells it takes to make a wrinkle?” and “Mom, can you ride a kangaroo?”

My personal favorite was, “Will anything happen if I eat this pimento?”

I remember the day he asked me that one. He peered up at me with his earnest little face, a green olive posed in the air between his forefinger and thumb, the red pimento taunting him like an out-thrust tongue. When I answered no, I thought about the fact that only a few days prior he had attempted to ride his sled off the second story balcony of our neighbor’s home. His curiosity seemed curious to me. He wasn’t afraid of a twenty-foot fall – but oh, the dangers he imagined to be lurking in a pimento!

Sometimes his questions were pensive and thought provoking, and other times downright impossible, and I worried that I wouldn’t know the answers – or, if I did, that I wouldn’t be able to articulate them in a way that would satisfy him. He wanted to know how chemists make shampoo from flowers, who invented the colors of the rainbow, and why God didn’t just simplify things by providing Adam and Eve with clothes.

Oftentimes he wondered about the meanings of words: “What does the word hatred mean?” “What is rigor mortis?” “What is abandon?” “What does he mean by nudist?”

His brows used to knit intensely over his brown eyes and his mouth would screw up on an angle while he awaited my answers.

I loved my role as enlightener, but hated the fact that I sometimes had to divulge meanings that were painful or complicated. Who wants to tell her four year old about rigor mortis? I tried always to be honest – recognizing that my credibility as a mother was at stake; and, generally speaking, he accepted my answers in the same way he accepted my love: whole-heartedly and without, er, question.

Looking back, I realize how innocent and beautiful these exchanges were. In our pre-diagnosis minds, we were simply mother and son enjoying each other’s company and the give-and-take pleasure of learning. We weren’t yet an Aspie and worried mother because no authority had pronounced us so. I’m not sure which of us, Christian or myself, was the more naïve.

I know now that while I was romanticizing his peculiar form of genius – I was certain he was a burgeoning philosopher, a philosophy prodigy, as it were – Christian was trying to make sense of a great puzzling world in which he took every word literally – literalism being a hallmark of Asperger’s. Everyday conversation must have done more than mystify him. It must, at least sometimes, have frightened him.

Think of how confounded he surely was when he asked, “What do butterflies feel like in your stomach?” Or “What do they mean by breakouts on the skin?” Or “Have you ever heard the saying, ‘My heart feels heavy?’” Or “What is a baby shower, anyway?”

I look back on these questions, within the context of his diagnosis, made around age twelve, and imagine what he must have believed to be true: that butterflies could invade a person, and rebellions could be fought on the skin. That hearts could weigh a body down, and that babies could rain from the sky.

Finally, one of his hardest questions presented itself as it necessarily had to, with the onset of puberty, when it became clear to just about everybody but Christian – who still reveled in his naivete – that he is not only autistic but gay. His question was born of the inevitable taunting that adolescents such as my son receive.

“Mom,” he asked. “What do people see in me?”

What they saw, I tried to explain, was their own fear of what they didn’t understand.

Christian is now twenty-two. He  listens when I consider a few of his questions out loud for this blog, thinks about the twists and turns his mind used to make. “I was a strange child,” he concedes. And then he smiles, appreciatively. A writer, a dancer, an artist, comfortable at long last in his own skin, he’s beginning to realize that he doesn’t have to be like everyone else, that his strangeness is not the burden others would have him believe, but a gift. It is the container for his creativity.

What I know from experience, and other people are finally beginning to see is, it is his very strangeness that makes him shine. I find that even more than enjoying my role as his enlightener, I love basking in his glow.

Carolyn Walker is an essayist, memoirist, poet, journalist, and teacher. Her work has appeared in Hunger Mountain, The Southern Review, Crazyhorse, Columbia: A Journal of Literature and Art, The Writer’s Chronicle, and Encore. She has authored a memoir about the life of her developmentally disabled daughter, called Every Least Sparrow. A graduate of the Vermont College Master of Fine Arts in Writing program, she is married and the mother of three children. She lives in Michigan.


Emily Willingham

Today, I bring you  Emily Willingham, writing about and posting an excerpt from her essay, “String Theory.”

When I wrote my entry for Gravity Pulls You In, I was teaching college physics to a hundred students. I did not realize at the time how much things would change in the coming year. Now, I teach one person only, and that person is TH. And even though we spend almost every waking hour together in homeschool, on walks, at play, he still must bracket each day with visits to or from me at the dimming of the evening and the dawning of the morning. In the evenings, at lights out, he invariably comes to me, grabs my arm, purrs. That means, “Can you come see me again just before I go to sleep?” And I can. And I do.

As you will see after reading the following excerpt, our days also still begin much the same as they always have. Yet there is that string, endlessly tugging tight.

I begin every day with a suddenness that is more alarming than an alarm clock. Each morning, TH breaks through my deep sleep with a thud, entering my room, pausing at the doorway, and then, as though overwhelmed by some forceful impulse, he rushes to my bed and leaps on me, placing his favorite fuzzy blanket on my head. This is our ritual in the morning. I overcome this unnerving awakening almost instantly and welcome him, listening to him get out his morning purring and vocalizations, letting him get some sensory input from me as we snuggle. Our connection is so strong that even with this zero distance between us, as I lie there at dawn with my firstborn baby now grown so big in my arms, that little tether under my left ribs still feels stretched tight, straining with the power of the love I feel for this child.

If I feel such a tug on that cord even without distance between us, I don’t want to imagine what it will feel like when the distance becomes real, maybe due to a first field trip out of town, or a high-school trip, or college. Or marriage. Or a job in another part of the world. I know that string will pull tighter than I’ve yet experienced. But just as Newton predicts, no matter how great the distance grows between us, there is a force that will still hold us together. And it’s not just the universal G.

When I think of that kind of future, I like to imagine that the flexibility of that string is itself infinite. Distance has limitations. It is not infinite, certainly not here on planet Earth. TH may go far from me, geographically or mentally or just because his days become too busy. If he proves to be as successful as his godfather, not in spite of but because of his diagnosis, I will rejoice, even as that string draws taut. If he becomes another Darwin’s bulldog, or even another Darwin, I will rejoice, even if it means he’s away from me. There will be times, I know, that the cord may pull and tug and hurt like hell. And there will be, God willing, times that it will relax and loosen and hearts will be merry.

But one thing I know about that string: As long as I live, it will never break. No matter what distance comes between us, that force will be there, tying us together. It is my love for him, ready to take a beating or be requited, to be stretched and strained and soothed and repaired, but never to be broken or destroyed. My love for my son, like the number 8, has no beginning and no end. It just is.

Today, age almost 9, TH comes to me every morning, sometimes even in the middle of the night, lying next to me, snuggling. But he’s bigger now, only a few inches shorter than I. Long arms, long legs, skinny. That big head. Yet when I look at him in profile in the quiet glow of daybreak, I still see that baby there, that small boy, the round nose, the freckles, the soft dimples even in sleep. And the string tugs. Because someday, I know those still babyish features will be older, more angled, rougher. And that string under my left rib will be tighter than ever when he no longer comes to me with the dawning of each new day.

Emily Willingham lives in Austin, Texas, with her soul mate and spouse, the Viking, and their three sons, TH, Dubya, and Little Da. Her published work includes the upcoming Complete Idiot’s Guide to College Biology and pieces in Backpacker and other national, regional, and local publications.

Susan Segal

One of the many things I loved about reading the submissions for Gravity was seeing a reflection of my own experience. It didn’t have to line up exactly for it to cut to my core.

I wasn’t a single mom and my son wasn’t in the school system, but Susan Segal’s second-person essay, “Sometimes, Never“, captured the urgency and black humor I felt as I scrambled to understand what was going on for my son without losing hold of myself.  The line, ‘Your boy is your religion now.’ says it perfectly.

One of your best friends works at the preschool. She’s the mother you wanted to be. She never says no to her two angels. You do it like this, she says: Instead of saying No standing on the furniture you say Feet on the floor please. Instead of saying No hitting you say It hurts when you hit. Your friend’s biggest family issue is the fact that she has no interest in sex and as a result her husband engages in various passive-aggressive behaviors like starving the dog and using the last roll of toilet paper.

I am not the mother I wanted to be, you tell her.

She says something that at first strikes you as wise and then floods you with so much guilt that you are struck dumb with failure.

She says: He is not the child you wanted him to be.

When your ex-husband comes to pick up The Baby you tell him that the director of the preschool recommended that The Baby get tested. He snorts. Tested for what? he says. The kid is four.

You nod. You have to agree. There was a time when you, too, were a rational person. When you read and approved of articles about overly medicated children and reviews of books about how modern society pathologizes boys. Now you are one of the converted. Your boy is your religion now.

You need to relax, your ex-husband says. Get in the car, already, he says crisply to The Baby and The Baby does, just like that.

You blink. I am relaxing, you say.

You call your doctor’s office. What is it regarding, the officious nurse asks.

I need to relax, you say.

Uh huh, the nurse says.

Tentatively, you say, I’m interested in medication.

What kind? she says.

Something slams into your buttocks and you wheel around. It’s The Baby’s head.

I’m hungry, he growls. I’m Chewbacca, and I want some MEAT

I’ll have to call you back, you say to the nurse.

(The essay continues in the book)

We leave the narrator in “Sometimes, Never” as she fills out assessment forms. But for many of our kids, the path to diagnosis isn’t a straight-forward one as this update from Susan shows:

By the time he was at the end of second grade, my son was on the verge of being expelled from our school district.  The only thing that saved him from that fate was, ironically enough, his diagnosis.  The obsession with a boy who had led him to the edge of a lethal cliff from which he had lifted one foot over the abyss, was deemed to have been a “manifestation” of his Asperger’s diagnosis. He was pulled back from the edge, as terrified and humbled as I was.

An irony:  He didn’t have Asperger’s.

That was the diagnosis when the terrible events of second grade occurred.  That was the diagnosis that saved him.

That was the low point.

He already had weekly OT, Social Skills, therapy with the doctor who had diagnosed him.  Days before the incident at school, the Social Skills teacher, who came to our house because she didn’t think him able to work in a group yet (and foolish me, I didn’t see this as an omen) told me she thought something was off with him.  More than usual, I said?  And she said, Yes, more than usual.

After the incident we switched therapists.  Then we switched schools.  My son was given the aide I’d been begging for since first grade (school districts get very generous when they realize they’ve dodged a major legal bullet).  The new therapist changed the diagnosis, which I knew had never fit, to PDD NOS, which, in its broad interpretation of symptoms, gathered him into its fold like a lost lamb.

Most important, my son seemed to wake up from the long dream-slash-nightmare he’d been having since the day of his birth.   He was more than remorseful about what had happened, he was devastated.

And he began to get better.

By fifth grade, he was getting his very first birthday party invitations from kids in his class.  He had become an ace baseball player.  He took up tennis and started calling the boys he played with at school by their last names.  I could drop him at a friend’s house and leave him there without anticipating disaster.

I look at him now, a pre-adolescent who has his first “girlfriend,” who plays the trumpet, and whom kids call to from across the playground to say hi, and I wonder at the mystery of it all.  Did all that intense therapy actually bring him to this place?  Or was he somehow “scared straight” by the “dark time,” as he calls it?  Or did he outgrow something?

But we know you don’t outgrow autism.  And though he now looks typical he is no longer a “typical” person with PDD NOS. He still goes to the computer every single morning to study the pro tennis standings so he can recite them to me ad nauseum later; He still thinks I can read his mind and falls apart when I indicate that I can’t; he still can’t stand to be contradicted even when he’s patently wrong. And so on and so on.

But our lives have substantially shifted – his and mine.  Last year was the first year since his infancy when I felt he was stable enough so I could go out on a date.  I went back to work on my second book in a serious way.  With the approval of the therapists, we exited Social Skills and cut back on therapy.

For so long my son was his diagnosis.  For so long I was the mother of his diagnosis.  Both of us are grateful for what we learned and are still learning because of that.  And we are moving on.


Susan Segal is the author of the novel, Aria, and numerous award-winning short stories. She is assistant professor of creative writing at the University of Southern California and an editor of Coast Magazine in Orange County, CA, where she lives with her son. She is at work on her second book, a collection of short stories.

Chantal Sicile-Kira

We pick up this excerpt of Chantal Sicile-Kira’s essay, “The Real World of Autism: The Refrigerator Mother Club” when Chantal and her husband were living in Paris with their two-year old son who was showing signs of Autism.

It was 1990, a time when the ‘powers that be’ in Paris considered Autism a mental illness. The little bit of support the family received was in danger of being removed unless they agreed to bring their child in for psychoanalysis, the ‘prescribed treatment’:

The third and last time I visited the analyst’s office with my son, my husband came with us. Our little boy, Jeremy, picked up a pair of rounded toy salt and pepper shakers and their holder, an exact replica of those you find on cafe tables. Jeremy stared at the rounded salt and pepper shakers as he rocked back and forth, seemingly impervious to all going on around him. He held them tight and twirled one of the shakers, concentrating.

“You are spinning that object. Why are you spinning the object?” the psychoanalyst asked my son.

“Because he likes to spin things, obviously,” I thought, trying to count how many Bruno Bettelheim books were on the shelf. My husband (Jeremy’s father) glanced at his watch, wondering how we had gotten roped into this.

“There are two of them. Two round objects. Do they remind you of your mother’s breasts, Jeremy?” asked the psychoanalyst.

She then turned to me and inquired, “Madame Sicile-Kira, did you breastfeed Jeremy?”

“Yes, I did,” I replied, alarm bells going off in my head. At this point I felt as if I were a character in a Woody Allen movie and I knew just how the rest of the scene would play out.

“For how long?” the psychoanalyst asked me.

“About four months,” I replied.

Suddenly, one of the shakers fell out of the holder in Jeremy’s hands, dropped onto the wooden floor, and rolled under a piece of furniture. “Oh, you’ve lost one, you’ve lost one of your mother’s breasts,” cried the psychoanalyst.

I instinctively clutched my breasts to make sure they were still there. They were. Both of them. I could not look at my husband; I knew we would both burst out laughing.

“And was it a difficult separation?” the psychoanalyst asked.

“No, I don’t think so—not to my recollection. Everything went smoothly,” I replied.

“Oh look!” exclaimed the psychoanalyst, observing Jeremy crawling past, chasing after the missing shaker. “He is searching, he is looking for the lost breast, his mother’s breast!” she cried. “Oh, he has found it,” she said, relief in her voice.

(The essay continues in the book.)

We pick up with Jeremy 18 years later, far from the Looking Glass world where mothers cause their children’s ‘mental illness’ and breasts are compared to salt and pepper shakers. From Chantal:

When Jeremy was diagnosed with autism about 18 years ago, I was told to find a good institution for him. And I have. It’s called school. Jeremy is now 21 and will graduate from high school with a full academic diploma this June. Right now he has a high-school GPA of 3.5 and is taking his first community college class, concurrently. His dreams for the future include his own place with roommates, a girlfriend, to earn money from what he likes to do, and to continue to learn, just like most people his own age. As well, he wants to give back to the community by writing and presenting about autism.

As for me, hindsight is 20/20. There are many therapies I wished existed back then when he was little. Perhaps I wish I had made different choices at times over the past years.  Yet, I think that we’ve done the best we could, and that Jeremy is really in a good place now thanks to the good people who we have met along the way who believed in him as I have from the day he was born.

Some of you may have seen Jeremy in MTV’s True Life “I Have Autism.”  For those of you who have not, you can watch it by going to my homepage at www.chantalsicile-kira.com and clicking on the MTV icon. His segment on the show was considered the second most inspiring moment out of 300 MTV True Life shows.

Recently, I finished another book, “41 Things To Know About Autism” (Turner Publishing), to be published at the end of this month. This is the book for people who want to learn a bit more about autism–great for community awareness. I blog at HuffingtonPost.com and PsychologyToday.com and have been appointed by the California Senate Autism Committee to co-chair the South Counties Autism Regional Taskforce. But, my most important job still, is transitioning  Jeremy and his sister Rebecca out of high school and into the real world. Welcome to reality!


Chantal Sicile-Kira is an autism advocate, International speaker, parent, and award-winning author known for providing hope and practical strategies to both families and educators. Chantal’s first book, Autism Spectrum Disorders, was the recipient of the 2005 Autism Society of America’s Outstanding Literary Work of the Year Award. Her books, Adolescents on the Autism Spectrum and Autism Life Skills, are also published by Penguin. Chantal is a blogger on the Huffington Post, moderates webinars for momsfightingautism.com, and occasionally hosts radio shows on Autism One Radio. Her family was highlighted in Newsweek and on MTV’s documentary series True Life “I Have Autism,” which was the recipient of a 2008 Voice Award.

Anjie Kokan

I am in awe of the poet’s ability to capture both a specific moment in time and the gestalt of an entire experience. The poems in Gravity do that for me. Anjie Kokan’s poem, “17 Sounds of a Boy with Autism featured at Your Daily Poem does that for me.

As does the gem, “Watching My Son Watch Sleeping Beauty.” There is a purity in the child’s delight and in the surrender of a mother’s love:

Watching My Son Watch Sleeping Beauty

“Red mouth,” he says to the mirror after he draws a jagged outline ‘round his small and serious lips with his sister’s cherry-scented marker. He’s in love with a cartooned blonde who dances barefoot to “Once Upon a Dream.”

“Red mouth, red mouth,” he shows me as he subtly licks the animated smile on his TV. Next he puts his two index fingers together to make the sign for “feet.” He must rewind back to the close-up feet scene a couple of more times before he will join the next step of this dance.

He laughs among the animated woods without borders, where jackrabbits hop in old boots, and the wild gold-eyed owl, centered in a cloak, sways with the winged beat of whistling blue birds. All the animals are happy, and the girl is happy, too, as grass tickles her leaping feet and her lovely red mouth sings of things that are seldom what they seem.

My boy’s small feet are barefoot as well, with their own dancing song, and a red, red mouth that holds kisses just for me. Tell me, tell me, how can I not dance, too?

From Anjie:

There is no doubt about it, autism, like any other disability, has its ups and downs.  I try to capture little moments in my writing to remind me of life’s blessings and keep me on the up.

“Watching My Son Watch Sleeping Beauty” highlights my son’s innocence and delight, for he has crushes on all the Disney princesses and has had an obsession with feet since infancy.   Therefore, the clip of Sleeping Beauty dancing barefoot in the forest was sure four-star hit with him. What I had hoped to capture was a celebration both of my son being his true, authentic self and of a mom who decides to dance along.


Anjie Kokan, formerly Greene-Martin, loves facilitating writing workshops for all ages and abilities for community groups and schools.  She is an award-winning writer who publishes poetry and prose.  Her work has appeared or is up-coming in publications such as The Upper Room, Toward the Light, BEST of Mamazine, Mezzo Cammin and YourDailyPoem.com.  Anjie enjoys a colorful life filled with laughter and drama with her husband and two children in Wisconsin where she teaches ESL through Gateway Technical College. She is a member of the Wisconsin Fellowship of Poets and a founding member of Grace River Poets.

Janet Kay

In her funny and moving essay, “A Child Blink,” Janet Kay writes that “in spite of the abundance of literature on the subject, there is no clear road map for communicating with an autistic child.”  It takes time and patience to enter an alternate world, a willingness to suspend judgment.

I’ve been thinking about that lately, about how imperfect words can be, how rigid we’ve become in our civilized state to exclude the growl from what’s considered acceptable vocabulary, to cast aside phrases like “I’m a tiger”  about an exciting gift because it’s not immediately clear what that means.  Janet listens closely so she knows the emotional language of her son Michael. She knows the same phrase could also have meant “he was hungry or angry, or that he’d just bee to the dentists, and his teeth felt clean and sharp.”

Though he counted and read early, Michael didn’t bother telling

us. In fact, he didn’t bother telling us much at all. His earliest

words and phrases came two years too late and were comprised of

clipped consonants, scant vowels, and very little information. The

mantra “A sun my eyes” was first used on sunny days and later for all

days outside. The phrase “A Bonnie” first described our cat, but was

later used to talk of any animal. The surprising words, “Two three,”

were spoken over and over for twenty minutes straight as one-yearold

Michael built a tower out of twenty-three blocks. It was the last

time we would hear him speak for years.

But the truly troubling part of Michael’s disability was always

his nonverbal attempts to communicate: running away, screaming at

close range, throwing things. Once, after hurtling a chair at a preschool

classmate, Michael cried for an hour before he managed to find

words for his remorse. “I didn’t know a chair could break,” he said.

Years later at school, he snuck an extra ravioli from the lunch

line and hid it in the pocket of his pants. At recess, his teacher caught

him trying to bury the evidence. Lacking an appropriate response,

Michael simply growled at his teacher.

We allow ourselves to laugh behind our hands. There is, after

all, a funny misdirection that courses through Michael’s mind. His

actions are as stupefying to us as the consequences of those actions

are to him. Furthermore, the “real world” is just as ridiculous, as Michael

is quick to point out. “Look,” he said recently as we were riding

in the car. “There’s a professional building. The other buildings must

feel so inferior.”

It lightens his load and ours to have so refreshing an outlook.

But there’s still a tragic side to all this. And for Michael, the real

tragedy lies in the diagnosis itself. He’d rather stumble through life

without it. Often he’ll be seen darting through halls at school like

he’s being chased by a gunman. Or sometimes he insists we take a

complex driving route, so that someone who knows him won’t see

him. Perhaps if he moves fast enough around corners, his diagnosis

won’t catch up with him.

After all, what has autism ever done for him? Michael’s been

running from the disabling trappings of his diagnosis for his entire

life. He’d rather have friends, thank you very much, than adults following

him around with clipboards.


(The essay continues in the print version of the book.)

I learn something new each time I read someone’s story. In Janet’s update, the phrase ‘bubble-up boy’ floated from the screen and has stayed with me ever since. She writes:

Sometimes I wonder if “the child” ever blinked.  When he was still living with us, Michael provided constant surveillance, noting everything we said and did almost round-the-clock.  My husband and I would escape him once a day when he was in high school to plan — word-for-word – that night’s dinner conversation in private, going to great lengths to follow Michael’s rules:  “Don’t ask open-ended questions.”  “Better yet, don’t ask questions.”  “Don’t look at him directly.”  “Don’t address him directly.”  “Don’t touch.”  “Don’t compliment.”  “Make a statement with your head turned while you’re standing at the stove.”

Our home was like a bad reality show then.  The cameras were always rolling. The lines were always stilted.  And, in spite of careful scripting and staging, our performances were always abominable.  We could not keep our son from escalating.  We couldn’t get him to eat or sleep.  We couldn’t draw him out.

And so we moved him out.  When Michael was 19, we took him to Target to buy towels and cooking utensils.  We put down a security deposit on a one-bedroom apartment ten miles from home.  We had a pizza delivered to his new digs, and we said our good-byes.

A therapist of Michael’s once told us that our son was a “bubble-up boy,” that left alone, he would eventually rise to the top.  And that’s exactly what he did.  Within the first six months of having his own place, Michael started making good grades at the local community college.  He started making fried rice in his wok.  He started making friends.  And we started making sense of it all.

Michael had always inherently understood the unique world he was born to, and he’d done everything in his power to maintain and protect its boundaries.  When we finally gave him the time and space he needed, Michael started to grow that little world of his until finally it spun into our orbit.

We see Michael two to three times a week now.  And every time, it feels like we’ve hit the fast-forward button.  We blink, and there he is again, standing in front of us straight and tall with a genuine smile on his face.  He tells us about the Italian zombie movie he’s just seen or the new recipe he’s made up – Spaghetti with brown sugar, anyone? And I honestly can’t tell whether I’m getting a glimpse into Michael’s world or he’s finally peering into mine.  Either way, it doesn’t matter.  I’ll stay in this place for as long as I possibly can.


Janet Kay works as a creative director and writer in St. Louis, Missouri. She is at work on her first novel.


Kimberly K. Farrar

Kimberly Farrar’s poem, “How to Talk to an Autistic Child”, pulled me into its orbit immediately. It echoed everything I believed and tried to practice in my interactions with Fluffy. To me, it was lyrical RDI (Relationship Development Intervention).


How to Talk to an Autistic Child


First, be still. Sit within her orbit.

Observe the way she leans into her

floppy run.


Wait.


The autistic child looks down, but sees everything:

Every glimmer in the sidewalk, every strand

of your blonde hair.


Do something physical and silent.

Make a surprised face, open your mouth

and widen your eyes.


You could nod your head or dance

a little, maybe spin slowly.

When she looks at you,

do it again.


You could try blowing

in your soda bottle to make

a deep jug sound. Be gentle.


Sit on the floor and toss a pillow.

Toss softly and say somthing

simple like, “Fun” or “Oh boy” or “Try again.”

She may repeat what you say or stop.


If you have gotten this far, you have had

a communication. When she runs away,

let her.


I think we can get cramped when we talk about talk. What someone doesn’t say, what someone does do, these are powerful ways to voice, too. Kimberly shared the following in a recent email:


I wrote this poem thinking about how communication with my autistic daughter has completely different parameters when compared to ‘typical’ communication.  Since words are difficult for her, they are often not the best route for forming a path, a connection.

It’s alternative communication. Physical movement and slightly exaggerated expressions have always caught my daughter’s attention, but it has to be honest and a little entertaining.

I wanted to tell people that the small connections–a smile, an approach, or a glance, are the beginnings of a relationship. Even when she runs away, it is a message and not necessarily a negative one.  She may be excited, or need a break to run back in later.

I think people can sometimes be upset or bewildered by autism. This poem was a way of saying, “Just try something else, and see.”  It is all ‘talk’.


Kimberly K. Farrar is a writer and teacher currently living in Astoria, New York. She has a B.S. in Creative Writing from the University of Arizona, and an M.A. in TESOL from Hunter College. She teaches in her community. Her work has been published in Long Shot, Lullwater Review, Mudfish, The Ledge, Voices of Autism, and other literary journals.