“A glass child grew up in a home with a sibling who takes up a disproportionate amount of parental energy. They often go unseen.” – Alicia Maples, “Recognizing Glass Children,” TEDxSanAntonio, December 2010
When I first hear the phrase, I feel myself crack. God, it feels good. I’m so used to being the windowpane through which others look, so used to sustaining cracks that I mend myself, that I’ve forgotten another thing glass does well: It shatters. I wonder how good that would feel, to shatter instead of crack.
We were two when you were diagnosed with autism. That word, autism, has not been a dear friend to us. It is the third body that weaseled its way into our mother’s womb, finding its way into you, into your placenta, nestled next to mine. Autism chose you, Rohan, arbitrarily leaving me uninhabited (and for that, I will never forgive it).
Autism has lived as my neighbor, the type you somehow get to know intimately over the years, without really putting much effort into it. Autism borrows sugar and rarely returns the favor. Autism builds a fence and lets in no one, waiting for the day someone will break it down and come in anyway.
Autism breaks computer mice and cracks screens, then screams until they’re fixed. Autism bites, first others, then himself. Autism is the sound of skin clicking as it falls from a clenched jaw back to the body, now covered in red and black bruises and raw blisters. Autism is the inability to control that behavior or understand how that somewhat enjoyable sound can be the cause of such hurt.
Autism is my twin brother being non-verbal, a lanky twenty-year-old with the mental age a tenth of that. Autism is a forbidden topic. It’s being told that I’m not allowed to speak for you. Autism is your family needing to speak for you, even though we wish we didn’t have to. Autism is none of the sweet, expressive, and intelligent person you are, and it is all of what you deserved in life but cannot have.
Rohan, I write letters to you all the time. If you could read, you’d see the note containing all of them on my cellphone. I love writing, you know, and I want so badly to write about you and us beyond the safe confines of an Apple app. But I freeze whenever I try. I think what I want most is your permission, to hear you say it’s okay.
So I’m asking you now: How would you like me to put you on the page? Every time, I seem to meet the limits of written and spoken language—no combination of twenty-six letters will create an onomatopoeia faithful to your vocalizations, and anything I produce will feel like I’m that little brat in the grocery store who mocked you once (poorly, might I add). Even if I wrote on ledger lines, penciling in notes in bass clef or maybe even treble, your guttural grunts, the distress or pleasure in your voice would be gone. Someone in my Zoom class once heard you scream and thought I had a cat. That’s just my brother, I told them. Ah yes, they said. Brothers.
Problem is, even if I were to somehow translate what you were saying into words, I would always doubt that I was translating it faithfully.
I suppose a close approximation might be saying that you babble. But you’re not really a baby, except when you’re all scared of the dark and turn on every light in the house. Then you really are a big baby. Your voice is high-pitched, but it also has that telltale timbre of a post-adolescent manchild. So, we say that “tumi kotha bolchho,” which means you’re talking. (Another question I’ve been meaning to ask you: Which language do you prefer between Bengali and English? You understand both, but which is easier?)
You are talking—it’s not really your fault that to everyone besides Ma, Baba, and me, your sounds don’t hold meaning. But we know they do, or at least we try our best to know. Your face gives a lot away: your thick semi-unibrow, your smile that slants to the upper left when you’re being playful. The pitch of a squeal and deepness of a grumbling usually lets us know when you’re getting frustrated or whether you’re really enjoying that ASMR video of the guy eating chocolate bars (I don’t know why you torture yourself).
We can also tell when you’re minutes away from a tantrum by the way you squint in annoyance during therapy. Everyone has those days, so we tell the therapist you need a break from it all before it becomes too much. Sometimes it would be nice to get a small thank you for all the close attention you get, you spoiled brat. Then I remember that no one in our family really expresses appreciation or love with words. Autism should make those expressions even harder for you, but somehow, you’re the one that brings your face three inches from mine when I cry and wipes away my tears. Maybe if I shattered, you’d be the person to put me back together.
If you could talk.
Would you tell me your favorite moments from your favorite movie, Winnie-the-Pooh?
Would you tell Ma that you secretly hate the Old Navy T-shirts and sweatpants she chooses for you, and that you’re ready for a wardrobe makeover?
Would you tell us that every time we bribed you with a lollipop at the doctor’s office, you already knew you were going to get a shot and just didn’t care?
Would you help me understand what it feels like when you stim?
Would you say Ma, and Baba, and Romila, over and over and over to make up for a lifetime of us never hearing those words?
Could you tell me if I’m getting it right, if I’m doing you justice when I write about you, and us?
Have you ever thought about what others see when we’re on our walks together? I imagine that to the worms we merrily trample over on the asphalt, we are shadows of death. To the stern tree branches stretching over the sidewalk, we are reverential worshippers, bowing low beneath to escape a wooden smite. To the breeze, we are proof of its existence, our wavy black hair a habitat for an ephemeral inhabitance within some solid matter. And to the dogs, the poodles, the pugs, and the golden retrievers, I imagine we are simply two humans to befriend.
The person holding the leash to one yapping creature casts us a wayward glance at first, then a smile, which slowly fades while the gaze holds a few seconds longer, curiosity concealed with courtesy. Because they’re probably watching us in a dance of sorts—both of our toasted-wheat skin tones and burnt-wheat eyes, both with the dark circles and slouched postures of teenagers almost done with being teenagers. You, despite standing half a foot taller than me, dawdle ten paces behind me as I do the power walk that vertically challenged individuals are accustomed to. Once the gap between us widens enough that it seems we might be strangers, I throw my hands up and turn back around until I regress to your position and manually propel you forward a few staggering steps. Our dance comes to a refrain—you somehow fall behind once more. Another passerby witnesses the resolution, wherein I inevitably take your hand and pull you along, as one does a petulant toddler refusing to leave a playdate, or a tree digging its roots deep into the ground.
Sometimes it’s hard. There are the little things: how doing homework becomes ten times more maddening when you’re jumping and screeching, how bringing home friends requires me to gamble on whether you’ll throw a tantrum that day, how guilt simmers in my chest each time I leave you behind for college.
And then there are the bigger things. We had just turned 18 when I signed papers to become your standby guardian if anything happens to our parents. It should have felt momentous, but it was so obvious. If not me, then who? But I’d be lying if I said that responsibility doesn’t worry me, and I’d be lying if said I don’t ponder the future and how to make sure you live the happiest life possible. That’s my job as your sister. For my troubles, I’m going to pretend that I was the one born a minute before you, okay?
But the most difficult thing of all, I think, is that there’s no one to justifiably blame for all this. It’s not your fault you have autism, and it’s not our parents’ fault that they often needed help from me as we grew up. And recently, I’ve started to realize that it’s also not my fault for feeling like it’s hard.
Have I ever embarrassed you? I’m only asking because I hope I’ve returned the favor of all the times I’ve turned ten shades of red due to your public shenanigans. It isn’t exactly glamorous to have to pull up your sagging underpants (seriously, you aren’t a skater boy). It was also decidedly not cool when you snuck away from us at that Walmart when we were six and made the store managers call a Code Adam and gave all of us a heart attack. What were you thinking? The candy aisle? I was supposed to be watching you, you know. Could’ve at least given me a heads-up you wanted M&Ms. I would’ve told Ma.
As much as you annoy me, as many times as I yelled at you to stop screaming while I did homework, I missed you at graduation. And Dad, since he was home with you. It should’ve been you next to me in the alphabetically ordered plastic seats at the auditorium. Rohan Santra, they would’ve said first, since h comes before the m in Romila. Instead, we each graduated without the other—you at home while I walked, me at college a thousand miles away while you walked. After looking at the pictures of you dressed up in a plaid blue button-up with neatly ironed khakis as I lay in my dorm room bed, I opened the Notes app on my phone and began yet another letter. I told you how proud I was of how far you’ve come since the days you had to painstakingly learn how to clap your hands, and how we never thought you’d be okay with the sensory challenge of a cap and gown. I told you I wished I could’ve been there with you. And then I never finished the letter, because how could I? Those words were the closest I could come to putting our language faithfully on the page, and yet I would never know if you agreed.
When I applied to college, I wrote that what drew me to majoring in neuroscience was you, your brain with its sulci and gyri that controls a functioning body but somehow prevents your mind from connecting with your mouth. It was true, but what I didn’t tell the admissions officers was that you’re also what drew me to writing. I write to fill the void, to fill the gap of a stolen voice with words that mean something, and nothing and, sometimes, everything.
Romila Santra was raised in Overland Park, Kansas. She moved to Baltimore to attend Johns Hopkins University, where she received her bachelor’s degree in neuroscience and then her master’s in science writing. She is now an incoming medical student at Harvard Medical School. Romila’s interests lie with narrative medicine, health equity, and all things neurodevelopment. When not at school, you can find her binging a good TV show or baking something with somehow perpetually browning bananas.