Why I listen: An essay collection

“I believe we all have an inner voice. We just need to find a way to get it out.”

This is one of my favorite quotes from Carly Fleischmann, an author and public speaker on the autism spectrum who communicates through a computer. She conveys that outspoken or timid, verbal or nonverbal, we all have voices. We just need to be accepting and willing to be patient to let these voices be heard. This is why I advocate. This is why I listen.

My first exposure to autism spectrum disorder, or ASD, was not through a family member or friend; it was through a science textbook about neurological disorders. I read about the chemical substances that were either marked as “lacking” or “excessively produced” in certain conditions and the neural pathways that created certain symptoms and movements. I remember learning about how autism is diagnosed, its prevalence and the research underway to detect the rare mutations in single genes for those on the spectrum. Autism, to me at that time, was science. It was something to read and learn about, a list of facts and findings to memorize. It took me a while to understand ASD beyond the level of “science” and to realize that scientific research alone is hardly sufficient to capture the complexity of autism.

In my junior year of high school, I took my first step toward understanding and experiencing the word “spectrum.” As a weekly volunteer at a facility for adults with developmental disabilities, I witnessed a wide range of abilities. Some required a more sensitive and attentive approach, while others rarely needed assistance. Lizzie, Mark and Laura typically needed help with eating, communicating and grabbing puzzle pieces; Kim and Jenny dominated in their games of checkers and puzzles. Even within the umbrella diagnosis of autism, there was such a wide range of abilities and difficulties.

The most enjoyable moments were connecting with the residents on a more personal level. Although many were unresponsive to my questions initially, they began to show more emotions through hand movements and facial expressions. Even though most individuals were nonverbal, I learned the recreational activities that each liked, their preferences for seats when playing bingo and their differing personalities and moods. I paid more careful attention in order to understand the messages they were trying to convey through their motions; if they started to stim or pace, I immediately thought about what was making them anxious or what they were trying to tell me.

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As a volunteer at the facility, there were some breakthrough moments that helped me understand neurological differences and autism at a deeper level. During one of our training workshops, we watched a video of Fleischmann. As a teenage girl with nonverbal autism, Fleischmann couldn’t speak a word until the age of 11 when she started communicating by typing words into a computer. Through the keyboard, she explained her constant struggle with controlling her own body and unleashed her ideas, emotions and ambitions. Today, she owns a blog, writes novels, interviews celebrities and speaks about her experiences — all through typing.

Here at UC Berkeley, I met Hari Srinivasan, who also communicates through typing. As an active speaker, writer and blogger, he not only allows the public to be more aware of neurological differences but inspires those on the spectrum and others to share their voices.

Fleischmann’s quote in one of her blogs, “I believe we all have an inner voice. We just need to find a way to get it out” is one I will remember and keep. Fleischmann, Srinivasan and the residents at my volunteer facility have a lot in common. They continually inspire through their fearlessness in the face of everyday challenges and express their thoughts and emotions with care.

This is why I will try harder to listen. This is why I will continue to spread acceptance about autism so that people are aware of neurological differences and can try themselves to hear the voices of all on the neurological spectrum.

— Eli Seo Yoon Oh

“That’s cool; you’re changing someone’s life!” my friend exclaimed. This is why I support. This is why I care.

My mother is a special education teacher, so I have grown up around children with disabilities, beginning to volunteer with them at the age of 10. When I was 15 years old, I bonded with a child in her class. He is severely autistic and nonverbal, but this does not seem to impede his communication. He was the “tough kid” who no one was able to earn the attention of.

Through consistent volunteering, I quickly became in tune with his behaviors. If he did not want something, he would push your hands away or cover his ears. If he was particularly frustrated, he would drop to the floor, biting his hand in an attempt to comfort himself. Sometimes, you could coax him up with his favorite toy, but other times, you weren’t so lucky. If he wanted something or was excited, he would clap and scream. He often had a hard time focusing, especially at circle time, and would often run away. When I sat next to him, however, he would stay put and sometimes lean on me or fiddle with the loose strings on my ripped jeans for tactile comfort. He rarely made eye contact, but when he did, he would smile, and it was the type of smile that could brighten anyone’s day.

I helped feed him at lunch with the aid of an app called LAMP that enables him to say what he wants to eat and drink. He used the program efficiently and was able to use minimal sign language to fill the gaps. Slowly but surely, he became comfortable with me, and earning his trust, watching his walls break down, is something I will never forget.

One day after volunteering, I walked outside to find him in tears, with everyone unable to calm him down. I sat on a nearby bench, and he immediately walked over, sat next to me, wiped his eyes and smiled. Shortly thereafter, I found out that his mother was pregnant with a second child, and I offered to help watch him whenever she needed. I began working with him outside of school, babysitting him and guiding him through his baseball games.

He was the “tough kid” who no one was able to earn the attention of.

For me, it was never about money. It was never something I did to reach a certain quota of volunteer hours for a club. It was never something I did so I could “look good” to admissions officers on college applications. It was much more than that. It was about the connection. It was about helping the kids and supporting them in their endeavors.

Communication is not solely verbal, and the ability to bond with and care for him showed me that. The most fulfilling part of working with him was seeing his improvement. Some days, he cried out of frustration, but others, he did not stop smiling. Nothing was more rewarding than seeing his progress as he efficiently communicated through sign language and his iPad and was able to accurately express his feelings and desires. Every day, he fought the barrier that his lack of speech created. Every day, he persisted.

He taught me many valuable lessons, and these lessons, combined with his positivity and determination, made working with him a privilege. His capabilities never ceased to amaze me. It seemed that every day, he had accomplished something new. The ability to wash his hands on his own, drying them and turning on and off the lights. The ability to ride a tricycle and steer it around tight corners. The ability to match colors and shapes. The ability to understand and respond to questions wordlessly. I am grateful that I was able to witness such improvements in his motor skills and transitions. I am grateful that I was able to work with him, and I will forever cherish the bond that I formed with him.

My friend was right, but she failed to mention the most important part: He changed my life too. I have done my best to make his life better, and in return, he has unknowingly done the same. This is why I support. This is why I care.

— Tory Benson

Contact Eli Seo Yoon Oh and Tory Benson at [email protected] and follow us on Twitter at @dcweekender.