Personal Statement: Jack and Maria

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Illustration by Emilie Farrugia

 

Tuesday, October 25, 2016 - 3:02pm

“I am a twin” is the perfect fun fact. Something relatively uncommon that doesn’t change. I hear little gasps or whispers — like they're wondering about a parallel me that exists, or whether we parade around in matching outfits finishing each other's sentences.

I often get the question “Does your twin go here?” to which I could simply respond, “No, he doesn’t,” but these days my response is prepared and longer.

“No. Jack has Asperger’s, a high-functioning form of autism, and he goes to a small school in Massachusetts for kids with learning and developmental challenges. He takes classes at a nearby community college where they help him with social skills and job readiness.” Usually the other person is quiet. I don’t know what they’re thinking, but maybe they envisioned some “Parent Trap” scenario. Maybe they imagined us running in similar circles of friends or having dual graduations, hitting all the big milestones at the same time.

They imagine us both like me, neurotypical ­— a word that describes people not under the umbrella of those diagnosed with Asperger’s, other autism spectrum disorders or other neurologically atypical patterns of thought or behavior. It’s hard for me to explain what exactly separates the way Jack thinks from the way I do; the only way to explain it would be to conjure him up, as everything I say feels reductive or vague.

He was diagnosed with Asperger’s when we were toddlers. Though we developed verbally and physically in time with each other, my mother noticed a few significant differences between us. Jack seemed less connected and he engaged in repetitive behaviors that he couldn’t seem to control. In 2013 the Asperger’s diagnosis was replaced by the umbrella term autism spectrum disorder, but it is still the way Jack identifies himself. It’s a diagnosis that includes high intelligence, socially awkward behaviors and repetitive or restrictive interests; I’ll be honest in saying that this definition doesn’t really mean anything to me. People on the spectrum are so different from each other, much of the criteria is fuzzy and Jack both does and doesn’t fit the textbook definitions.

I could tell you that Jack has always been a little unlike most of the guys my age. He is often quiet and almost always compassionate, rarely expressing dislike for anyone. He isn’t competitive and has encyclopedic knowledge of certain music and television facts that he reveals randomly and surprisingly. He likes routine, SpongeBob and his iPad. He is incredibly sensitive and often mistakes intent to correct behavior for a jab at his whole character. Yet he has a grasp on sarcasm and forms of nuanced comedy that is thought atypical of those on the autism spectrum.

Jack is a man of few words so we don’t talk just to fill space. In “The Curious Incident of Dog in the Nighttime,” a book both Jack and I love, the protagonist is Christopher, a young man on the autism spectrum who dislikes small talk. We joke, calling this “doing chatting,” and Jack says he doesn’t like it either (I assume most neurotypical people also dislike small talk and are just better at hiding it).

Academic professionals told my parents Jack might never be able to read, let alone graduate high school or live alone. Today he reads well and often; however, reading comprehension and articulating his thoughts about a text through verbal or written language is incredibly challenging. He has navigated the complex New York subway system for six years as if with an internal GPS, committed his time regularly helping kids with Down syndrome and serving at a fast-paced soup kitchen in Lower Manhattan. He’s lived away from home for over a year. Aside from an occasional harsh tone or F-bomb to an annoying sister, I can’t remember a time when he was unkind.

Though Jack loves to jokingly remind me that he was born six minutes earlier and is therefore the oldest in our family, questions of birth order are complex. Measuring age by rotations around the sun doesn’t really work for us. When I was the first to leave for college, I knew that in a functional way, I was the singular oldest child.

It was never a question whether I would go to college, but rather which competitive and well-respected college I would choose. I have always had standards — for friends, grades, writing, morality, all of it — to a maybe impossible level. I overschedule, overextend and work quickly. Despite normal bouts of laziness or procrastination, I admit reluctantly that I hardly cut myself slack. What I mean to say is Jack and I are close, but we exist in seemingly different worlds.

Since preschool he had always been in a smaller class than me, cloistered away. He often practiced echolalia, a pretty word for repeating common phrases to himself, a calming mechanism, unsavory to the public. He would ask people how many doors their houses had and how old they were, something that was endearing at age 4 but soon became inappropriate. In elementary school, when kids would ask me why he was the way he was or why we didn’t go to the same school, I would turn red, finding myself at a loss for words. I remember being 5 or 6, when Jack and I sat glued to “Arthur” or “SpongeBob SquarePants.” He would cover his ears during the theme songs but be entranced by the cartoons the whole time. For a long time, he insisted on only wearing long pants and long-sleeved shirts during the summer.

Mental health professionals think people with autism have heightened senses. Some compare it to being inside a fun house. This explained some of the clothing particularity and why he would cover his ears, and even maybe the perfect pitch in his singing voice that brought people to tears when they heard Jack singing Sinatra’s “Fly me to the Moon” on our answering machine in the early 2000s. Maybe it explains his desire to spend time alone. It is thought that kids like Jack go somewhere else, to another headspace, when the sensory overload gets takes over.

I’ve had trouble with this idea of “somewhere else,” even as a self-proclaimed daydreamer and a cultivator of an imaginative life. A stubborn part of me questions this other world despite an otherwise open mind. I think I buy into the twin clichés sometimes, wanting our minds to be in perfect sync with each other, a cosmic pairing no one else would understand.

In the space of Jack’s certain quietness in a loud and chaotic world, I sometimes notice things about him that I only know how to explain by the fact that we are twins. Though he never expressly said anything to me about it, I urged my parents to give Jack more independence when we were teenagers because I had instincts that he was ready. I don’t mean to speak for my brother or assume access to his every thought, but I know he has grown my capacity for empathy and a critical eye toward a world that often discounts an “unconventional” mind.

More than wishing that my brother were different, I am stubborn in wishing that the world were, that I didn’t have to think of an ableist slur or a punch hurled at Jack when he gets flustered or overwhelmed. I wish such a narrow-minded achievement model didn’t loom over us both, disproportionately affecting people like Jack who learn and develop in ways deemed abnormal or unconventional.

I feel a twinge of guilt when I think of a confused 9-year-old me — her quietness about Jack. I think of how I wish I could say to her, “Your twin brother has a boundless bravery and compassion that I wish you could understand.” I think maybe that shame left somewhere around seventh grade, when I tried to comfort Jack one night when he was distraught over being bullied at school, a systematic problem that the school had been neglecting. I knew that my quiet brother was much wiser inside than he was able to let on and had a capacity for astronomical feeling.

Jack proves daily that our minds are mysterious, varied and without need to show themselves ostentatiously. He reminds me to be goofy and patient and often forces our family to lighten up when the mood gets heavy. He is incredibly affectionate and remembers the silliest moments of our childhood that will always make me smile, half because of what they are and half because it is Jack telling them in his way. I think we’ve come to know that our developmental milestones look different, and that it’s OK because it has to be and it should be.

I wish to embrace the fun-fact twin answer so fully, in all of its complexity and nuance, something only made possible by pulling my brother into the circle with me — so that everyone in the room can feel how lucky I am to have him as my other half.