After taking a deep breath, I go downstairs to the kitchen. It is ten o’clock in the evening and the house is dark. My dad is asleep on the living room couch by the kitchen, and my brother is in his room upstairs. My mom is distracted, wiping the counter while looking at her cell phone.
“Umma?”[1] I call out to her.
“Mm… What is it?” She does not look up to answer.
“I have a question.”
“Yes, what?” She is still not looking up, not expecting what I am about to ask. “Do you know what autism is?”
“What?”
“Autism.” I have her attention.
“Describe it to me.”
“What I think obba[2] has.”
I recently discovered a poem by Connie Post, “If I Could Explain It,” that resonated with me. I read and re-read the poem as if it was a letter from my mom. I hear her voice in the lines, “I wish I could explain to you / Why your brother doesn’t look at you / Doesn’t say as many words as you” (Post 38). I imagine her wondering, “If you knew it was called autism / Would it make a difference” (Post 38).
* * *
It is my junior year of high school, and we are moving onto Ms. Vogel’s lecture on “Genetics” in Honors Biology class. I flip through the handout for today’s lesson, and stop on page three. There is a chart of genetic disorders: Achondroplasia (dwarfism), Cystic fibrosis, Tay-Sachs, Marfan syndrome, and Down syndrome. At the very bottom, there are a few terms under a separate category, “possibly genetically-linked disorders.” I do not recognize one term: autism.
“Her description of people with autism, as those who have trouble understanding other people’s feelings or talking about their own feelings, especially sticks with me.”
Ms. Vogel characterizes autism disorder, now categorized under one umbrella as autism spectrum disorder (ASD) with Asperger’s syndrome and pervasive developmental disorder not otherwise specified (PDD-NOS), as a developmental disorder with an unknown cause. She explains that it is often accompanied by mental retardation, and that people with autism lack social skills, struggle with communication, and show unusual interests and behaviors. Her description of people with autism, as those who have trouble understanding other people’s feelings or talking about their own feelings, especially sticks with me. It bothers me.
I go home that day and am itching to find out more information online. How could a group of people be medically defined as insensitive? I start researching. On the National Institute of Neurological Disorders and Stroke (NINDS), United States Center for Disease Control (CDC), and Wikipedia, there are factsheets on symptoms and treatments of autism. I skim NINDS. “Poor eye contact,” “impaired ability to make friends with peers… initiate conversation with others,” “restricted patterns of interest… preoccupation with certain objects or subjects” (“Autism Fact Sheet”). These indicators pop out of the screen at me. There is an itch in my brain that I cannot scratch.
I close my eyes and I see. These medicalized descriptions suddenly seem so personal as I picture my own brother Amos. I see Amos, just two years older than me, struggling to look me straight in the eyes while I ask his genius-self to help me with minor Pre-Calculus homework. I see him eating pizza with a fork and knife at the end of the lunch table with his aide, Mrs. Zahor, who is by his side for the entire school day, from first to eighth period. Lastly, I see my brother yelling “UIB”[3] through the hallways of Northern Highlands Regional High School and the chuckles of students, who my brother thinks are laughing with him when it is obvious that they are actually laughing at him. Until now, I had chosen to ignore these images and scenes; I did not like being (in)famously known as “Amos’ sister.”
* * *
I know what you may be thinking: Did she live in a shell for sixteen years? How did she not know what autism was until high school while living with someone who has autism? In fact, looking back, I ask myself the same questions. How did I not know? Further, I wonder why no one thought to sit me down and tell me. Did Amos’ aide assume that I obviously knew? Did his guidance counselors and my guidance counselor assume the same? I had been pushing off reflecting on my ignorance until now, but I am curious: Did my parents really not know that Amos had autism until I brought it up?
But that could not be true. I remember when the Korean film, Marathon, first came out in 2005. I was in fifth grade when my dad made us watch Marathon. The film is based on the true story of Hyeong-jin Bae, a nineteen-year-old man with autism who completed the Chuncheon Marathon in less than three hours. Hyeong-jin Bae is portrayed as the character Cho-won (Park). Marathon was made to spread awareness about autism spectrum disorder; how people with autism are treated in Korean society due to lack of awareness; and how both aspects affect familial relationships. My dad is not the type of person to keep up with mainstream trends in media—he only does so if necessary to keep up with worldly discussions when he goes to his biweekly prestigious high school alumni meetings. His sunbae[4] must have recommended Marathon.
Cho-won’s mother tried so hard to help her son be and feel “normal” by supporting what he seemed to truly enjoy: run. With so much attention drawn to Cho-won, the mother unintentionally neglected her younger, neurotypical[5] son. At the time, while watching the film in Korean with no subtitles, I saw the protagonist as someone with a generic mental disorder, mentally disabled and unresponsive. But I saw his mother as just another parent, struggling to find what was best for her child. I did not pick up on the beauty of the film with its familiar depiction of Cho-won’s family dynamics. I did not realize that Cho-won’s neglected younger brother was a dramatic, rebellious version of me. I did not notice the similarities because our family never associated with the label and I did not question.
* * *
“As he grew older, if he did talk, it was to himself.”
There is no history of ASD in my extended family, and my mom never previously met anyone with ASD. She only broadly knew of autism through books and media, yet when Amos started showing “red flags” at one and a half years— responding minimally and rarely looking straight at her—my mom knew. As he grew older, if he did talk, it was to himself. He got into a habit of touching his hair, making a bald spot right on top of his head (Han). Amos obsessed over numbers, and had a strange fascination with putting his tongue on the ground—my mom notes that my dad especially did not tolerate this behavior. But the main point here is that my mom knew, but did not care to learn the English term for 자폐증.[6]
When Amos started “normal” pre-school in California, his teachers advised my mom to send him to a special education school because he did not speak in class like the other kids did. Not knowing any better, my mom took Amos to a school for physically and mentally disabled children. But she began to notice unwanted changes. Amos started imitating the awkward, unnatural gait of physically disabled children. She says that he even came home less vibrant and more depressed. After one semester, my mom took Amos straight back to “normal” school. She wanted him to have positive influencers around to learn from (Han).
***
There are still times when I catch him, a twenty-three-year-old, grown man, mumbling to himself, giggling at the same acronym: UIB. But a lot has changed since Amos was licking floors. He is now considered high functioning on the spectrum of autism disorders. He has become much more verbal and expressive. And, especially after coming back home from Johns Hopkins Center for Talented Youth (CTY) sleep- away summer camps with neurotypicals, he has definitely become less picky with the kinds of food he eats and the manner in which he eats. My parents even consider Amos to be more independent than I am. While they still hesitate to give me permission to just drive home to New Jersey from Massachusetts, my parents easily approve of Amos’ plans to travel alone. This past summer after graduating from Lafayette College, Amos spent a week in California. He biked from San Francisco to Los Angeles, a distance of 450 miles.
After I became aware of ASD in Ms. Vogel’s class, I slowly broke the silence at home. I asked questions that my mom did not hesitate to answer. She had kept silent for too long—afraid of caging my brother within the boundaries of a label. She and my dad had Korean and even Korean-American friends who warned them that associating Amos with a mental condition may cause setbacks for the whole family. She saw his potential—how he memorized every highway and every road in the U.S. Atlas at age one—and feared that Amos’ abilities would be doubted and undermined because of his defined disability. That fear was not without merit—teachers at Northern Highlands Regional High School initially discouraged my brother, who had an A+ average in CP-level math, from taking an honors-level class without proper explanation (Han).
I cannot definitively say that Amos and I would have had a different relationship now if I had known he had autism earlier. However, I feel guilty for not being as understanding and accepting of his “strange” behaviors when we were younger. I wish I could have had more empathy and patience. At least, earlier awareness would have given me the words to discuss the common feelings and frustrations, and a community to reach out to.
Works Cited
“Autism Fact Sheet.” National Institute of Neurological Disorders and Stroke. National Institutes of Health, Sept. 2009. Web. 06 Apr. 2015.
Han, Miyoung. Personal interview. 05 Apr. 2015.
Park, Soo-mee. “A Boy in the Crowd Who Stands Alone.” Korea JoongAng Daily. JoongAng Ilbo, 24 Feb. 2005. Web. 06 Apr. 2015.
Post, Connie. “If I Could Explain It.” Seasons of Love, Seasons of Loss. Pleasanton, CA: Author, 1992. p. 38. Print.
Works Consulted
Baker, Al. “Working to Combat the Stigma of Autism.” The New York Times. N.Y. / Region, 30 June 2013. Web. 16 Apr. 2015.
Siegel, Bryna, and Stuart Silverstein. What about Me?: Growing up with a Developmentally Disabled Sibling. Cambridge, MA: Perseus Pub., 1994. Print. “Signs and Symptoms.” Center for Disease Control and Prevention, 26 Feb. 2015. Web. 16 Apr. 2015.
[1] Romanticized version of “엄마” meaning “mom” in Korean.
