Family | Health | Parenting

The Greatest Challenge of Raising an Autistic Child as an Autistic Parent? The Ableist World We Live In

Being disabled means hundreds of thousands of people believe they always know better than you do.

I watch my son, Julian, work one of his chunky wooden puzzles, the pieces a perfect fit in his hands. Mine were made of laminated cardboard when I was his age, just shy of five; I almost envy Julian’s Winnie-the-Pooh characters with their coats of non-toxic paint, each with their own space to nestle in, little licensed islands in a solid sea.

Julian devours paper, in the literal sense, and chews thinner puzzles to bits. We’ve lost many peg-impaled numbers and letters and colorful fish to his sensory-seeking. The tray puzzles of my childhood would never stand up to his enthusiastic play.

Electronic puzzles are a godsend. They’re impossible to eat. He brings me his tablet with an open jigsaw application turned up to the highest difficulty. I put down my phone as he invites himself into my lap.

“Welcome aboard.” I give him a loud, exaggerated kiss below his ear. “What can I do for you?”

“Hah.” Julian tries to move my hand onto the screen.

“How do we ask nicely for things that we want?”

“Pee.”

He rubs his flat palm haphazardly around his torso, an approximation of the ASL sign for “please”. It’s one of the few signs he’s been able to replicate on his own. Expressive language will always be more difficult for him than receptive; for Julian’s brain, understanding speech is easier than speaking back.

“Pee,” he repeats, settling in against me, the sides of our faces smushed together.

“Find the corners first,” I tell him. It’s how it’s supposed to be done, how it must be done. “See these with a flat edge?” I hold his hand to help him extend his pointer finger instead of using his thumb to move the pieces across the screen. It leaves a sour feeling in my stomach, making Julian move his hands a certain way, but I don’t know how else to work on his fine motor skills. “The ones with a single flat side help make the frame, but the corners have two flat sides, so they help you orient the border.”

“Der.”

“Yeah, border. Good words, buddy.” Our fused fingers find a corner piece. “Left edge,” I show him, “and top edge. It goes up here.” The tablet makes a satisfying click as we drag it into place.

I eventually figure out how to turn the difficulty down to twelve pieces, and we go a few more rounds until Julian grasps the concept. Flats go here; unflats go there. He belly-flops over to the other end of the couch to work them on his own. There’s an occasional request for assistance when he can’t get a piece in exactly the right spot. Mostly, we stay in our semi-separate spaces, his feet tucked against my thigh, orbits tethered, binary planets always, always connected.

We stay in our semi-separate spaces, his feet tucked against my thigh, orbits tethered, binary planets always, always connected.

*

When you’re autistic, the entire world is a puzzle, challenges lying in wait whether you’re ready to work them or not. You can’t parse the language of a teasing friend. Authority figures bear inscrutable faces. Personal truths bubble up from your guts at the worst possible moment. No one makes sense, and no one seems to care. When our circuits overload and we retreat to safety, protect ourselves, we’re perceived as being rude and cold and distant.

We make you uncomfortable, but you can go home and change. Autistics can’t, no matter what abled activists and allies insist.

Autism Speaks popularized the single puzzle piece as a mascot; the vast majority of other autism organizations follow suit. It seems innocuous enough; laypersons tend to see the piece as a symbol of understanding.

“We can’t comprehend your separateness,” they say. “You puzzle us, and we want to work you out.” The sentiment is marginally better than outright disdain. They believe they hold the key to solving us, and we’re all pieces of the same puzzle of humanity. Regarding the latter, which is far less ableist than the former, well-meaning people aren’t entirely wrong.

“We can’t comprehend your separateness,” they say. “You puzzle us, and we want to work you out.”

To charities claiming to speak for us, we lack some vital trait, an intrinsic quality to our souls. “See the poor autistic, stumbling through life bereft, barely human, and incapable of autonomy.” They raise money to cure us, and train behavioral therapists to fix us, and force compliance upon us. In an ally’s rec room, autistic persons are the thousand-piece puzzles sold for a quarter at rummage sales, excitedly brought home to put together only to discover there’s one piece less.

But you read the box incorrectly. We have exactly the number of pieces we should. You just have to find the corners first, and ours tend to be completely overlooked.

Being an autistic parent of an autistic child means navigating a world that doesn’t see us as whole while advocating for two people at the same time. Specialists don’t take autistic parents seriously, don’t trust that we know our own needs, let alone a child’s. How can we when we’re in need of special services and accommodations, too?

When I ask for Julian to be tested for qualification for Tennessee’s early intervention program, the evaluator initially dismisses my concerns.

She tells me, “His speech is fine.” I know better. “Kids all learn at their own pace,” and I’ve heard and read that before, having spent the first five months of my pregnancy memorizing What to Expect When You’re Expecting between bouts of vomiting.

“He’s delayed,” I say, because Julian is. My then-two-year-old knows a handful of signs, and loves saying “tree” when he wanders around the yard hugging trunks and kissing bark. His echolalia knows no bounds; I’d been put off the scent of his speech delay when he repeated the word “indignant”. Otherwise, he uses a language I can barely interpret without context clues.

It isn’t only speech. Julian learns skills and forgets them just as quickly. He spins around on the kitchen floor until he runs into the fridge or bounces off the oven door, a giggling bumper car, yet has difficulty walking up and down sets of stairs, constantly tripping over his own feet.

Julian ate our stack of mail last week, both ingoing and outgoing, and I know he doesn’t have pica.

But here we sit with this evaluator, she and Julian and my sister and I, all communed in the living room floor of my cousin’s scrupulously clean home, as opposed to ours full of moving boxes. Wedding and family photos smile down on us, the adults dressed as professionally and grown-up as this strange woman with her bag of toys and papers. I feel out-of-place in my men’s jeans and t-shirt; my sorority sisters had taught me to dress better, but I always felt out-of-place with them, as well.

“There’s nothing wrong with him,” says the evaluator. She looks bored while saying the worst word in the world.

“I know there’s nothing ‘wrong’ with him.” My fists clench between my thighs, legs crossed like a denim pretzel. “There’s nothing wrong with me, either. We just learn differently, and he needs help learning how to learn.”

So did I, goes unsaid, expressed only by the nails cutting my palms, and I never got it.

The twenty-minute diagnostic feels like an entire afternoon. I leave numb and exhausted, but I’d stuck to the guns I don’t have. She finally agrees with part of my own assessment. Julian has delays with his self-help skills—of course he does; he’s a bud from my branch—and a “slight” fine motor deficiency. Even she couldn’t ignore Julian’s inability to complete that portion of the test, his little fingers failing to put the little plastic square into its home on the tray.

He qualifies for a single thirty-minute session every week. It isn’t going to be enough, no matter what she’d scribbled in her papers. For Julian, even accessibility is inaccessible.

*

Julian doesn’t so much graduate to wooden jigsaws as much as I become curious as to whether he’s ready for them. I plug in his tablet to “rest” and pull out the bag of Christmas presents he still hasn’t grown into. The box of twelve-piece dinosaur puzzles lies close to the top, sitting on the dress-up doctor set with pieces Julian would definitely put in his mouth, a gift-wrapped choking hazard. I shove the bag back with my foot, take up my typical residence beside him, and get to work.

“Do you want to play puzzle?” It’s a Friday afternoon. We’ve come home from his first private swimming lesson, and Julian is fidgety and restless. I’m essentially the same, though where his turns into spontaneous exercise, mine verges on anxiety.

He turns from his side onto his back, not quite looking at me, but somewhere beyond my head. “Puh?”

“Yeah, with dinosaurs!”

Julian’s gaze lands on my cheek. “Duh?”

I nod, and hum, and pull him up by the arm. An article I read during his learning-to-walk phase reminds me that this could give him arthritis, or dislocate his shoulder, or maybe I’m grabbing too hard and he’ll bruise, and if it hurts, he has no way of telling me and—

“Puh?” Julian slots in beside me like he belongs nowhere else; his hand seeks out my hair, weaves it between his fingers and grips. “Puh, pee?”

Deep breath; shallow breath; shallower. Will he ever be overwhelmed by little things like I am? How do I teach him to breathe if he is? My own nervous breathing isn’t exactly ideal, and his body won’t understand my instructions. I’m full of words—good, helpful words—and can’t find the well of his mind to pour them into. There’s no map to navigate; children don’t come with a prewritten manual, as my mother says, but there isn’t even a Dewey Decimal number for people like us.

I slip open the lid of the puzzle. “This uses a sliding dovetail joint. I used to watch Norm Abrams on PBS on Saturday mornings.” The lid falls over the arm of the couch. “That’s the same place that makes Sesame Street—I bet Luis knows about dovetail joints.”

“Thah wuh.” He points to the top-left-corner compartment, disengaging my hair.

“Oh, I think this one is the stegosaurus. Are they still called stegosauruses? Stegosauri?” Twelve pieces stack themselves beside my knee on the couch cushion. “You know, pterosaurs used to all be called pterodactyls.”

I’m breathing easier, though I almost freak out again when I hip-check the side of Julian’s head in my search for the box lid. It doesn’t faze him.

*

Being disabled means hundreds of thousands of people believe they always know better than you do. I’ve spent my life—both before my epilepsy and autism and mental illness diagnoses and after—listening to authority figures and peers tell me who I am. I largely accepted their analyses; I’d never much trusted my mind.

Being disabled means hundreds of thousands of people believe they always know better than you do.

We know less about our brains than we do about the bottom of the ocean, I read once. Whether or not it’s true, I’ve adopted it as a truth of my own. You can’t trust what you don’t understand. My neurologist and psychiatrist have parsed the physical misfirings of my synapses, but the paths my thoughts follow are known to no one but me.

It takes two individual sessions with an early intervention instructor before our caseworker calls for another meeting. We’re her very first case, she told me during our individualized family planning session. I’m already on edge, always on edge, frayed laces on a beat-up skate, and I know it shows. There’s about to be heartfelt advice, and it isn’t going to be heartening.

The caseworker hands me a brochure, and my attention is drawn to the tiny fading tattoo on her hand. I wonder how she managed to land a government job with visible ink in a red state, but the trifold paper redirects my focus immediately. There’s a photo of a woman and child on the front smiling as they play with wooden blocks. The toddler looks happy; I can almost hear them laughing, can picture them knocking the blocks over and rebuilding the stack again.

“You could use a break,” our caseworker says. Her tone of voice is sympathetic, just as it had been in our previous meeting. I can tell she believes in her work, in the importance of it and how she can help both me and Julian. “It would only be temporary.”

Beside me, Julian’s assigned instructor nods along. She’s a kindly woman in what I think is her late fifties. We met at the library for his first session; it immediately became apparent that she couldn’t handle my active, joyful, nonverbal and noncompliant son. I can only assume she’s passed along her concerns to the caseworker, her assessment that if she can’t control my child, then I can’t, either.

Across what serves as a church’s storage room, I watch Julian try to catch a bright green ball tossed by my sister. His smile is wider than the child’s on the brochure, and his clothes are just as clean and neat, an orange fleece jacket and jeans passed down from his cousins, shoes purchased on sale. He’s a blond and blue-eyed blur.

I tear my eyes away and stare back down at the brochure. Foster care. They want me to put Julian in foster care.

My ensuing silent meltdown takes me back to my first postpartum therapist and her concerned eyes, her smile as she leaned forward into my space, into the ever-growing bubble I was trapped in.

She said, “Maybe you should check yourself into the hospital.”

And yes, I was a mess, a human disaster, ground zero for postpartum everything. I couldn’t sleep and did nothing but cry. Emptiness was my only self-definition.

“Who will take care of Julian?” His presence didn’t comfort me. I had yet to bond to him, barely recognized him as human through the fog of depersonalization. Still, he needed me, no matter how much I couldn’t feel.

“Your husband can.”

I shook my head. “That isn’t an option,” and I didn’t say why.

“Why not?” because of course she would ask.

“I’m . . . breastfeeding,” which was true enough.

“You can pump in the hospital,” but I knew better than to be hospitalized, just like I knew better two Novembers later with two more well-meaning women. If I left Julian or put him in foster care, I would not get him back.

So in the therapist’s office, twice per week, I refused to commit myself. There was no way I was going to release my child into someone else’s care, not then, not now.

“You could use a break,” and, “You should check yourself in,” meant, “We don’t trust you with your child because you’re an unexplorable ocean. You can’t take care of him because you are disabled.”

I was epileptic. I was autistic. I had post-traumatic stress and an anxiety disorder. In the span of a year, I’d lost my grandmother; my father; a close friend; my husband, though not to death. Maybe I really did need a break or hospitalization. Perhaps I was missing a piece.

“No,” I said through tears.

Now, I can’t look at our caseworker, or the instructor, or the tiny room of the instructor’s church. The pew is the only thing grounding me, keeping me from drifting away.

“No,” I say again, remembering how I dressed him this morning while lying frozen on the couch with needless fear. I made his lunch and fed him through a quiet panic attack, and picked up his toys when the suicidal ideation hit, and cuddled him after my stress-induced seizure when he hopped down from his nan’s lap to come check on me.

“No,” I say. “He’s the only piece of my life that fits.”

*

We live in the gaps of the sidewalk and, despite days where I feel butterfly-pinned and days he loses all self-control, we’re thriving. Life is complex and enormously inaccessible, but we’re finding a balance.

Our Quaker meeting house is airy and bright. I was married here what seems like an ice age ago, but Julian and I are slowly making better memories. He’s playing with a puzzle in the nursery that must be as old as I am. Julian tries to work it, all oblong pieces, notchless and without corners. I hate puzzles like this; they were deliberately made to make no sense.

We cheer him on as he points to what he thinks goes where, the Sunday School teacher and his cousin and me. Julian doesn’t smile, but he does keep going, plodding along ahead regardless of how much he understands.

Mine and my absent husband’s families both give us unconditional love and support. Our meeting welcomes us and encourages our presence, interruptions and all. Julian’s therapists are as concerned about me as they are of him, but not in a suffocating or pitying way; they know when either of us are having a hard day, and do what they can to accommodate. His early intervention preschool is as disabled-parent friendly as the language clinic he attended from ages two to three, spaces secured by the same caseworker who suggested I give him up.

There are still neurotypical strangers who make for awkward encounters. I was caught off-guard by the group of mothers who moved their children to the other side of the playground, eyeing us, a protective circle of ostracism. At the grocery store self-check, a man sneered at Julian when he wandered over and tried to help him bag his groceries. Other children’s unkindness is the hardest to swallow—when we went to an age-appropriate library storytime, a girl walked over afterward and kicked him in the face.

The main autism organization in our vicinity had a children’s summer camp I wanted to enroll Julian in. It seemed like a good opportunity for him to spend time with his peers and perhaps to make friends. But the shirts the campers wore sported a big bright puzzle piece. I emailed the coordinator, explaining that, as an autistic parent, I was troubled by the idea of putting my child in a shirt that quietly demeaned him. Politely, carefully, I asked if he could be given a plain shirt of the same color, even offering to pay the same price as the screen-printed one.

They never returned my email. Disabled allyship rarely extends to those who are actually disabled. We answer their questions, and they choose not to listen.

So when a girl at our Vacation Bible School asks me, “Is it hard?” I’m understandably wary.

“Is what hard?”

“Him,” and she gestures out the kitchen door with a nod of her head, pigtails swinging forward.

Outside, I see Julian laughing, running across the yard to embrace a tree. He gives the best hugs, affectionate to the point of suffocation. I try to focus on him and not the turmoil of the question. I blink-blink-blink to keep myself from sitting on the floor and shutting down, because she’s a second grader, and she’s only curious.

Deep breath. I hear his father’s voice, the one he reserved for people when he loved them, the tone I’m left to teach to his son.

Deeper. I remember the specialist who diagnosed Julian and warned me that he might never live on his own, when I can barely live on my own. He said it like I should be upset by the idea, like I’d consider it a burden.

She waits.

Is it hard?

“Nope,” I say. Julian wraps his arms around the tree’s trunk, his tongue stuck out to taste the bark.