Photo courtesy of Sophie Peel

Inches Apart: A Sister, Her Brother and the Stubborn Wedge of Asperger’s Syndrome

I best explain the regression of my relationship with my brother through a series of photo albums wedged lazily in dust-covered plastic boxes in my parent’s garage, the pages laced with our mom’s romantically slanted cursive describing dates and memories. 

It starts when all three of us kids are little, lined up on the sand at the beach. He’s four, my sister is two, I’m one. We’re all in flared beach hats, with chubby limbs and toothy grins looking gleefully at the camera. There are no inches between us, our bloated bellies are touching and our arms looped chaotically around each other.

Then he’s seven, she’s five, I’m four. His hands are laced behind his back, his shoulders slightly hunched forward. He’s smiling, and so are we. We’re all in wide-brimmed hats, this time in the desert on a backpacking trip. There are no inches between me and my sister, but there are a few inches between us and him. He stands to the side, his lean form wearing the same color and style of cargo pants he still wears today, nearly 20 years later. He’s uncomfortably lanky. His smile is guarded this time, begrudging.

“I’m working on it. I really am.”

he said

Then he’s 10, she’s eight, and I’m seven. We’re in Vermont at my grandparent’s house, near the massive pond my grandpa built and the handmade bridge we’d spend hours jumping off of every day. My sister and I are in our brightly colored one-piece suits;; he’s in long pants and a long shirt, standing off to the side. He’d stopped wearing swimsuits, and my parents have given up trying to get him into one. He’s smiling, but no teeth show and there’s only faint curvature at the edges. And there are  more inches between us and him.

He’s 16, she’s 14, I’m 13. My parents are in the picture, too, stacked directly behind me and Emma, their hands on our shoulders. My brother stands apart from us, again with his hands laced behind his back, no smile. He stands feet away from the rest of us.

He’s 26, she’s 24, I’m 23. He is no longer in our family pictures. He is either not there or refused to be in the picture. It’s a common scenario: My mom asks for a picture of the family. We all huddle up, but he refuses to get in the frame. My mom pleads with him, my dad gets mad at him, or more recently just says sternly, “Annie, drop it” and the picture is taken. The other people at the scene of the photo – either family, friends, strangers or acquaintances – feel the discomfort. My sister, ever the stoic, gets a cold and unfeeling look on her face. I feel tears coming up but scowl and hold them down. It feels like a veiled meltdown, each of us processing it in a different way. We all look stony, but have smiles ready when the camera snaps.

I only just recently started to talk about my brother. It seems odd, that I’m only 24 and already can’t seem to muster the courage to acknowledge a relationship that to many comes so naturally in conversation. Usually this sentiment is shared by someone in their middle age, who is just beginning to reckon with an estranged sibling, finding some beauty or moments of joy and reconciliation in the pain. For me, I’m right in the middle of it, and I am choosing to not handle it. I’m right in the middle of the important years, where either you do the work to mend the relationship or you let it slip to the wayside, unattended. I am neglecting it, and I am aware of this. I don’t know how to do otherwise.

For me, mentioning my brother feels loaded. It’s territory I’ve never willingly stepped into. If I say, in passing to a stranger or a new friend, or acquaintance, something as simple as “I have an older brother,” I always feel myself tense, as if they’ll know, in that simple string of words, that something much deeper is there to unpack. Then I hope they don’t press me any further. 

Often, the normal follow-up questions come: How old are your siblings? What do they do? Where do they live? Are you close with them?

I inevitably start with my sister. It’s easy: A friend, a year and a half older than me, is in the Peace Corps, a role model. How I miss her and how she’s annoyingly sensical and grounded, how whenever she’s home it incenses me that she re-wipes down the kitchen counters after I do because she’s always been more thorough than me, how methodical she is about making her coffee, and how nothing really seems to get her down for too long. The normal adoring sibling gab, the tropes. 

I usually peter off after I talk about her, hoping that the person will forget to press about the other one. Sometimes the person I’m with will be too preoccupied, as we all are, with themselves, to ask about the other sibling. But sometimes they’re not, and do ask. And that’s when I silently weigh my options. 

Either I get terse and cold, and say something to the effect of, “he’s three years older than me, we’re not super close and we’re pretty different.” Or, if I’m feeling a bit more courageous, I launch into a condensed version of the complications, the gravity of them never really making sense to the person I’m with – the facts not really making sense, either. They don’t understand why I speak with him maybe once every six months, and why it sounds like every time we’ve just met for the first time. 

I exchanged no words with him that day – not one. Not a hello, not a goodbye, not a “please pass the mashed potatoes,” not a thing. It is a one-way understanding – not for him, since he’s not socially adept, but for me – that I do not try. I am tired, and I am fractured from it, and the pain is far too close to the surface.

Me: Hey, how are you?

Him: Good, how are you?

Me: Pretty good.

Him: Okay, see you later.

I don’t really know his personality, and the things I do know, or at least cling onto most, whether by choice or by trauma or by anger, I don’t really like. 

Autism, by definition, doesn’t really make sense to normal-functioning people. Kids with autism normally don’t understand social cues and sometimes can’t put themselves in other people’s shoes. They’re often stringent with a schedule, and easily get upset or angered by situations outside of their daily schema of the world they’ve constructed. They can be rigid and come off as uncaring, and rude. They say what they want, not bothering to think how it might make the other person feel.

My brother has Asperger’s Syndrome , a condition that’s recently been absorbed into the diagnosis of autism spectrum disorder. He is all of the above things, magnified.

He is angry and isolated. I blame his 15-year long addiction to video and computer games on my parents. I know they didn’t know, when they first got him a Game Boy, that it would be his only lifeline – the one that kept him going, and also the one that perpetuated his loneliness and anger and isolation.

He is also insanely bright, has a wicked sense of humor and is incredibly helpful and patient when someone asks for help.

He hated listening to music in the car when we were younger.. Car rides home from school would be pierced by uncomfortable bouts of threatening rage when we would play a station he didn’t want to hear. He once stabbed a pencil through the back of the driver’s seat, because our nanny wouldn’t change the channel. Her head was right in front of that seat, and I could only think that his clear rage, his eyes wide and his teeth bared, signaled that he wished there was no physical barrier between him and the nanny.

I remember the fleeting moments of hope, too, like when he had a crush on a girl at his high school. The high school catered towards kids with learning disabilities – some severe, some less severe. Katherine, who hated her name and went by Kat, was brash but kind. She said what she wanted, was overzealous about things, but was also unashamedly her – she was on the spectrum too, but seemed to skew to the more harmlessly annoying side. 

My mom tried everything she could to facilitate times when Backus and Kat could hang out. They didn’t kiss or touch, but they talked about video games and had a similar snarky sense of humor. She made him laugh sometimes. Every time, I felt myself lift, even if just a little.

We ended up taking her on a family kayaking trip with us to Mexico. She started to get on his nerves when she pushed him on things. Occasionally she would poke him when she wanted a response, her own disability sometimes hindering her ability to sense his anger. At one point, she was playfully hounding him on something. He started to resist by politely declining to elaborate, then more pointedly, then I saw his fists ball by his sides, I saw his teeth grit. I became frightened, and told Kat to quit it. I could see the agner festering, and I knew how this anger normally culminated, and that was in violence. I was 10 at the time.

That trip ended in my brother barely speaking to Kat. She felt sad, I could tell. I could see the heartbreak in my mom’s eyes – a potential hope that he could care for someone or be a normal teenager and like a girl and maybe take her on dates – and the trip was ending, him gritting his teeth and scowling every time Kat spoke. There’s a picture from that trip. It’s us three girls lined up on the beach, a foot or so apart from each other. We’re eating fish tacos. My brother sits ten feet away from us, arms wrapped around his legs, scowling at the camera with dark, violent eyes. 

I remember on that same trip, I came down with a severe cold. That night, I slept in my parents’ tent. My mom brought me hot chocolate spiked with a tad bit of Bailey’s that night, as I cocooned in her sleeping bag. Later that night, when I got out of the tent to pee, the sky was alarmingly bright. Stars smattered the sky, almost touching they were so clustered, and I forgot that this is what the sky was supposed to look like. I lay there for half an hour, on the sand, goosebumps forming, and thought that if I were a bigger person, or a better sister, I would wake up my brother and tell him to come look at the stars. It probably would’ve been our only chance ever. But I didn’t. 

I lay there, not moving an inch, knowing that whatever mental gymnastics would urge me to call out my brother’s name, I wouldn’t, and I would lay there, taking in the scene for myself selfishly harboring what felt like my secret.

There’s no halfway point with someone with autism, no compromise. You compromise, or there is no compromise. You go three quarters of the way – sometimes more – or there is no meeting point. 

Sometimes, on a good day, I’ll drum up the energy to go a little ways. I’ll ask him about his video games, or about his part-time job at an Amazon packaging warehouse.  I usually make it about a  quarter of the way, before I realize, if it took me this much to get here, will I ever get to three quarters? The next time I see him, I get lazy again. 

Me: Hey, how are you?

Him: Good, how are you?

Me: Pretty good.

Him: Okay, see you later.

I swear every few months his shoulders round a little bit more, his eyes become darker, and I feel the scar tissue of our relationship hardening, cementing, a little deeper. He is unaware of this, and I am fully aware of this. I still grapple with which one is worse. 

Recently, for the first time in roughly a decade, my brother went overseas with my parents to visit my sister in Ecuador. My mom asked me to pick him up at the airport, which I did. I prepped for the silent pickup by turning on NPR, something he enjoyed, as did I – we both have always been curious. It was something to fill the silence when we both wouldn’t.

“Hey, how was the trip?” I asked, premeditated, when he opened up the door, chucking his luggage in the back.

His eyes were a little brighter, and he had a half smile on his face. 

“Hey, Sophie,” he said. “It was good.”

Our 20-minute drive started out fine. Good, even – for us. He talked about the wildlife in Ecuador. He’s insanely smart when it comes to storing bizarre facts about obscure things, and he rattled them off eagerly. But slowly, things spiraled. 

He’s four, my sister is two, I’m one. We’re all in flared beach hats, with chubby limbs and toothy grins looking gleefully at the camera. There are no inches between us.

the author writes

He commented on how power-hungry and stupid the TSA people were at the airport. I held my tongue. Then we went to Subway, one of the few places he would eat. He ordered cheddar and roast beef. The subway lady, through the little drive-thru intercom, said they didn’t get their shipment in yet of roast beef.

“Sorry, babe,” she said. I recommended to Backus that he get turkey or chicken. He refused.

“Let’s just go,” he said. “We’ll stop by another one.”

I had already driven out of the way to find this Subway. I was mad. My movements with the car got sharper, my mouth tensed, and I hunched over the steering wheel so he couldn’t see my face.

I felt him looking at me, something he almost never did. The few times I would look directly in his eyes, I’d be reminded of just how bright blue they were, much bluer than my stone blue, but the same almond shape that gently slopes up at the corners. His face was striking, whenever I would look at it – sharp corners, curls much like mine, just darker, gently sloping over his forehead.

“Are you upset about something?” he asked. Again, a novelty. 

At that moment, I felt a deep ache. He was trying, and he didn’t often try, at least not with me. But I was still clouded with anger.

“I wish you were nicer when you talked about people,” I said quietly.

“I’m working on it,” he said. “I really am.” 

To us, this was deeper than we’d gone in nearly a decade – shallow, compared to most people’s standards. But as I felt an emotion welling up through my chest and through my throat – tears have always come frustratingly easily to me – I held them back. I knew it would send him into a deep discomfort, and likely a deep internalization that he had caused me pain, and he was already living amidst so much of that. I decided to pocket it for another day, as I had done countless days prior, when I was two, then four, then seven, then 15, then 19, and now, 24. 

Sophie was born and raised in Portland, Oregon. She attended college in the South and worked for NPR in Georgia as a Couric Radio Fellow before moving back to Oregon and working for Willamette Week. She currently freelances and fills her free time with frequent existential crises.

Sophie was born and raised in Portland, Oregon. She attended college in the South and worked for NPR in Georgia as a Couric Radio Fellow before moving back to Oregon and working for Willamette Week. She currently freelances and fills her free time with frequent existential crises.

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