The Full Spectrum
Several years ago, when my oldest daughter was four, she received the picture book Home by Carson Ellis, every page a watercolor imagining of what home could be, whether around the corner in a city apartment or in a farmhouse with horses . . . or downstream from Poseidon’s underwater castle or in a shoe with the old lady and her children or on the moon with an earth-side window view. “Home is a house in the country,” the book begins. But “some folks live on the road,” we read, with band musicians climbing onto a big bus. There are “sea homes” sending forth knights on seahorses and a “hollow tree home” whose grandfather rat occupant leans on his cane by the door.
“Which home do you like best?” I asked my daughter when we turned to the page whose house looked most like our own, with a low, steep roof and wide front porch and left-side fireplace chimney. That house is repeated twice on the same page, the top rendering sparse and neat, the bottom version covered in jump ropes and birds, work boots, and Christmas lights, flowers sprouting along the sides, and a coffee mug jauntily placed at the porch’s far right corner—the detritus of a naptime break, I presume in motherly fashion. “Which one is your favorite?” I ask her, as she processes her opinion. Once we work past the concept of “favorite,” which has never resonated comfortably in her mind (she would be at home with the Croatians I knew one summer: “How can I say favorite? I am favorite for everything!”), she easily chooses.
“The messy home!”
“Why do you like it?”
“Because of all the fun things on it that I love.”
I was not one bit surprised, even though I myself would have breathed easier in the top house with little to distract, nothing out of place, all errant coffee mugs removed inside to the sink or dishwasher. (A years-ago roommate once reported that her mother, who is from Japan, had expressed strong approval of my lack of wall hangings. “Calming” is how I remember her describing my tidy, sparse living space, and I bubbled over with pride.) Several pages later, my daughter and I arrived at the outer-space palace housed beneath a connecting round of bubbles and tunnels and tubes. She paused over the adjoining greenhouse garden bubble and asked, wonder in her voice, “Is this real?” The tiny undersea lair, sea horses sailing forth, stymied her, too. Or, rather, did it merely evidence the degree to which her disbelief is so often suspended, willing or no?
My girl has autism. Sometimes I love the autism; her brain moves her into wildly creative spaces. She thinks in imaginings I would never have dreamed, and she delights in creative ideas deeply. Other times, I hate the autism. I hate that it has grown into an entity of its own, a separate being in our family that we didn’t ask in. At any given time, it sits with us at the dinner table, and on the floor among the detritus of play, and in the nighttime terrors and master bedroom visitations, and on the playground when friends’ games are too complicated or aggressive, or when misunderstandings abound and friendships just don’t work out in general.
Like all beings, this one—the autism—grows, and lately, if I may mix metaphors, it has grown into a piece of my own mental furniture. That is by far the iteration I have hated most of all. How did this happen? Did I read one too many online articles? Add one too many books to my expanding disabilities library? Did I hear—let’s face it—too many behavior-changing diet and supplement recommendations? Whatever the genesis, the result is that I’ve found myself lately looking upon my high-flying butterfly of a once-in-a- millennium expression of God’s beautiful image of a daughter, and seeing her first and foremost through the dark glass of autism.
Did she stutter over her stumbling words trying to express a thought? That’s the autism, I think to myself. Did her calm start to melt apart at the edges when I forgot to give sufficient warning about an activity change? The autism, I say. Has it been a rotten day in general, where emotions have skyrocketed at the drop of a hat? We’ve had an autism kind of day, I say aloud to my husband when he gets home. And that’s the moment I know I’ve given this thing far too much agency in my own mind. It’s lounging around up there, living larger than the two little girls I spend my days with. It’s sitting plumb on top of my ability to bear all things, believe all things, hope all things, so I can’t get at them. This is a version of thinking decidedly not filled—to quote my girl—with fun things that I love. Time to clean house.
A little while ago, on a summer morning that was miraculously unhot and unmuggy, I lounged outside on the porch, the girls running the length of it in laps, racing on foot, on tricycle, down the stairs, and out into the scratchy tall grass to find caterpillars and butterflies and other bugs that would be easily caught along with some clover flowers. I can’t remember if the autism had made any substantial showing that day, but I recall feeling happy and relaxed, so chances are it had just been the three of us that morning—me and my big girl and my little girl—and I was sitting on the porch swing, looking down the long porch that had been the part of the house I most loved when we purchased it two years ago, my eyes scanning the roofline hung with butterfly-attracting lantanas and hummingbird-loving fuschia, and my oldest girl flying around the corner, past the chicken wire fence and the turquoise plastic spinning pinwheel that leans at an accidental angle, up the stairs, jumping past both tricycles, leaping over the training wheels of her bike, remembering not to trip over any of the jars full of dried plant life or topped with hole-punched lids for bugs and such to tell me There are more buds about to blossom in my wildflower garden along the side of the house! It’s the garden I began one month before, sowing seeds successfully for the first time ever, not yet noticing how comfortable I’ve grown with this mess that shows forth the nearer glories of all our lives lived together. That morning was the first time I noticed. So I went down with her to look, to try to identify the new flowers, to hope for more butterflies.
There is only one element I don’t want here in this jumble of life that is suddenly, surprisingly beautiful to me. Except sometimes I do want it, when the autism augments the good of who my daughter is without adding to her misery, that same misery we all know in one way or another during this life between Edens. What I want is for the autism to diminish, and if it can’t do that in her bodily experience, then at least it can grow smaller within the space it takes up in my imagining and understanding of this wonderful girl. I don’t yet know how to relegate it to its proper place, but I am hopeful. If my favorite house is the messy one now, then I can change and grow, too.
This essay was offered anonymously, so as not to disclose this awesome girl's diagnosis to the big, unknown internet world before she's old enough to consent. But the author is very sociable. Email her at firstname.lastname@example.org. One of her favorite things to hear is, “Hey! Me, too.”