For most, our daily routine allows us to remain secure in a comfort zone with which we are well acquainted. For my brother Barclay, however, each day presents new and unseen challenges that place him in a constant state of vulnerability. Seemingly simple things such as getting lunch or going to the dentist push him into a state of insecurity.
Barclay was diagnosed with autism at age 2 and has undergone strenuous speech therapy, participated in social integration programs and attended special needs institutions in order for him to get to the place where he is now. The normalcy of living with my brother provided me with a heightened sense of empathy for those with both physical and neurological disorders. I found it easy to be understanding of their situation and everyday struggles. Even though I had not experienced it firsthand, I knew what it meant for my brother.
As I grew older, I began to realize that not everyone shared the same mindset that I had. Walking through a restaurant, mall or airport, I could see people staring, whispering or looking away uncomfortably. People had difficulty understanding Barclay’s condition and thus felt uneasy around him. This judgment was not any fault of the individuals, but it existed because of their lack of knowledge.
As I grew older, I began to realize that not everyone shared the same mindset that I had.
I began to realize that within my personal world, much was known and understood about the disorder. In the world at large, however, ignorance was prevalent and was at the root of misunderstanding, inaccurate stereotypes and discomfort surrounding autism as a whole. In high school, I had to constantly explain and re-explain how autism could not be classified as a set of diagnoses, but rather that it presents unique challenges and manifests differently for every individual.
My experience with autism has shaped the person I am today. I have volunteered at my brother’s school, Woodview Learning Centre, for about six years now. In interacting with children of various ages and at various points on the spectrum, I have learned and gained more than I had ever thought imaginable. The sense of positivity, enthusiasm and authenticity that each of these children brings to their everyday lives has been a source of inspiration for me. The experiences of volunteering at Woodview have broadened and shaped my perspective on being open-minded, accepting and inclusive to everyone we interact with throughout our lives. It has allowed me to truly appreciate our differences and be able to see the value that each and every person brings to life.
Autism is not something that can be defined, categorized or even fully understood. It is not something to be afraid of, uncomfortable about or framed as “other.” Accounting for more than 1 percent of the global population, autism is something that impacts people everywhere, and as a result, it should be embraced, understood and talked about in society in order to create a much healthier dialogue and open narrative about the disorder and how it impacts the people around us.
— Carter Horan
Watching my younger brother, Benjamin, run to his heart’s delight along Memorial Glade for the first time was an inexplicable feeling. I had studied, napped, played Frisbee and walked past the Glade several times during my two years so far at UC Berkeley. Is it the greenness of the pasture or the collective student sigh that silences the roar of the thoughts in my head as I lie down? The day Benjamin ran along it for the first time brought about a different roar of thoughts in my head, full of happiness but also of fear. Would Benjamin be this happy if he went to college someday?
My younger brother, Benjamin, is an incredibly happy 4-year-old boy who loves trains, books and McDonald’s. He also happens to be on the autism spectrum. Someday, I hope to see Ben in high school and college, being completely and utterly himself without having to shy away from the criticism of others. If he continues to have difficulty in speech, I hope that others are willing to listen and try to understand how special his mind is. If he has trouble interacting socially, I hope he will find and maintain a close group of friends who support him always. These are just some of the wishes I have for Ben as he grows up. In reality, most of it depends on the words and actions of others. Are others willing to respect him? Support him? Befriend him? I hope so.
Ben was diagnosed at 18 months, which is earlier than the average individual on the spectrum (3 years old). That’s when early intervention programming began. As so many professionals have told my mother and me, autism therapy is a marathon, not a sprint. Amid everything, Ben is an extremely happy boy. Because he can’t pronounce my name, we call each other “buddy.” He always screams it at me when he sees me through video chat or during one of my visits.
Like a true Salvadoran, Ben loves pupusas, especially the ones with frijol y queso. He doesn’t get as nervous anymore when our extended family visits during birthdays or holidays. And just like that, Ben changes and grows day by day with his disability as intact as his joy. But what most people don’t acknowledge about autism is that it is not limited to children; there isn’t an age when individuals just “don’t have autism anymore.” And personally, that idea is the scariest for me and for most families worldwide.
I joined Spectrum: Autism at Cal because I need to understand what life beyond childhood is going to look like for Ben.
I joined Spectrum: Autism at Cal because I need to understand what life beyond childhood is going to look like for Ben. I feel grateful knowing that at Spectrum and in Berkeley itself, the birthplace of the disability rights movement, I am educating myself to be prepared for our increasing influx of students with disabilities. That is one of the things we’re working toward in Spectrum. We want to promote visibility and awareness and acceptance not only in academic settings but especially among peers, and build a loving community.
And because I want to see all the things I hope for Ben come true, I feel that need and responsibility to spread awareness about autism. If you take five minutes out of your day and think about what it means to have autism or any kind of disability, would you consider being a support system for someone who may have it? How would you go about doing that? For starters, becoming involved in your own community during your spare time is a great step toward comprehending what children or students our own age experience on the spectrum.
Another way to get involved is right here at Spectrum! We wish to make sure that people on our very own college campus understand that they are surrounded by more peers with autism and other disabilities than they realize; we aim to achieve this through our meetings, awareness and acceptance week and annual 5K run events. I recall a general meeting where I learned about the difficulties that adults with autism face during voting season such as environmental stressors and the complexity of the polls. During Acceptance Week last semester, I realized that the people with autism in movies I had seen were not very accurately portrayed, and I learned about the misconceptions of autism. And now, with the 5K run that happened April 7, I was very excited to see the campus, the community and my family come support our fundraiser for local autism-focused nonprofit organizations. One of the most fulfilling experiences during my time at UC Berkeley so far was seeing Benjamin run through the Glade at Spectrum’s 5K run.
I truly believe that the more people know, the better they can understand that each person may be different and can carry a disability, visible or not, but at the end of the day, they should be loved, included and cherished. That’s why I encourage. That’s why I hope.
— Silvia Nolasco
My cousin Chen and I did not have a pleasant first acquaintance.
It was nine years ago. I was lying in my bed, watching TV until my mother brought Chen into my room, exclaiming, “Judy, meet your cousin Chen!”
He was skinny and had frowning eyebrows. Out of politeness, I waved passionately to him and took out all of my toys. Different from everyone I had met, he did not wave back or show any interests in my toys. He did make any eye contact either; whenever he got excited, he screamed for his mom, shouting (in his language), “Me-me!” All he did was continuously watch an episode of “Teletubbies.” And me, well, I just sat beside him, confused and… mad.
My mom told me that he had a “self-isolating disease,” the Chinese translation for autism spectrum disorder. Ah! OK! So autism was a disorder, and my cousin had autism, so he was sick! Aha! That’s why he acted so strangely and was obsessed with “Teletubbies.” I sympathized with him, but I still found myself avoiding him at family reunions and wouldn’t talk about him with others — maybe just as Chinese media called children with autism “stars,” he was an isolated star beyond the horizon, somewhere I could never reach.
I know I was a terrible cousin.
We did not see each other for a long time after that acquaintance. Then one day, my mom asked me to pick him up from school with her, and I couldn’t refuse to go. It was a special education school. At the gate, I hesitated to enter while my mom went in to bring him out — I did not want a throwback to that intense confusion and madness when we first met.
To kill time, I started reading the progress reports on the wall: May 3, pays more attention; May 5, patience improves; May 8, finishes a puzzle. Besides the entries were some artworks by the kids — they were not perfect, but the colors, the moving animals and their bold imagination were not what I would expect from a kid who seems to be nonverbal and only interested in “Teletubbies.” The perspective in these entries and drawings struck me — he was not a patient but merely a regular student who required more time and tolerance to develop his potential.
I inched my way through the hallway and reached the activity room. I surprisingly found my mom with a big smile, humming that familiar “Teletubbies” song while he numbly scanned her up and down. I felt the urge to call my mom back and stop this awkward scene, but suddenly, he started to giggle shyly, hands covering her blushing face.
It was the first time I had looked into his eyes.
Did my autistic cousin just smile? I took a cautious step into the classroom. When he saw me, I smiled timidly and stared quietly at his face for a few seconds. It was the first time I had looked into his eyes. Chen seemed scared and buried his head into my mother’s arms. Seeing how he trembled at that moment, I panicked.
“ ‘Teletubbies’!” I yelled excitedly. “Time for ‘Teletubbies,’ time for…” I waved my hands uncoordinatedly around for a lame rendition of the “Teletubbies” theme song but immediately started regretting it. Just as I was extremely embarrassed, Chen lifted his head and looked at me. And smiled.
It was our first real interaction. I suddenly realized that once I put my guard down, Chen was actually willing to approach me and give me the first glimpse into his world as well. That trust was mutual. In the following years, I learned about what made him happy and ways to communicate with him, whether through words, movements or “Teletubbies.”
Now, I also devote time to other children with autism. Regret for how I treated Chen accompanied me for years, but what now outweighs that is my gratitude. Without him, I wouldn’t see how autism has led to inaccessibility to the social services he and many others deserve; I wouldn’t have been motivated to found an autism awareness campaign in high school to spread autism awareness, conduct interviews with parents of people on the spectrum or organize one-on-one volunteer activities to have people experience the world from their viewpoint.
Now that I am in college, I am also a member of Spectrum: Autism at Cal, where I luckily found a group of awesome and compassionate people working to promote acceptance and uniqueness for people like him in a larger community. Most importantly, as I gradually learn to become a qualified cousin, he has taught me how to put myself in the position of others who might seem completely different from me and to empathize, care for and love them.
I have learned, and I will keep on learning, how to be a better cousin.
— Judy Xu
My cousin Junho strays from the “societal norm.” He was born with severe autism. Amid the underlying scorn of disabilities within my family’s conservative culture, Junho was the living scar that my family tried to conceal. He was never brought to any extended family gatherings or even mentioned in family conversations. I always knew of Junho’s existence, but I rarely knew anything about him. Because of this deeply rooted stigma, I learned to never ask about him and, slowly enough, it was as if he never existed.
It was many years later that I finally began to understand the severity of our situation. During our grandfather’s funeral, we carried out a family tradition wherein each family member’s name is engraved onto a passed family member’s gravestone. But I was appalled to witness my aunt consciously forgo writing Junho’s name. It was only after Junho’s sister reproached her, asking, “Is Junho not even family to you?” that she squeezed his name onto the edge of the rough draft paper, almost begrudgingly.
That moment hit me in a wave of shock. How? Why? I couldn’t answer the questions circling in my head as I awkwardly sat there, trying to make sense of the situation. This unwarranted contempt toward Junho made the question surface in my mind: Does a disability make someone less human?
The answer — a resounding no — came to me through Milal Mission’s Agape class, offered by an organization dedicated to empowering those with developmental and intellectual special needs. During my four years volunteering at Milal, I met Erin. Erin, like my cousin Junho, is on the autism spectrum. She was not able to see, hear, walk or talk, yet Erin and I formed an inexplicable bond like no other. Coming from a background of ignorance, I learned that the physical and mental barriers between us were insignificant. Erin was just a teenage girl.
This unwarranted contempt toward Junho made the question surface in my mind: Does a disability make someone less human?
As many teenagers do, Erin absolutely despised broccoli but loved kimbap and spaghetti and meatballs. She would gladly eat a grape but would profusely refuse to chew another bite of watermelon after the first. She loved basking out in the sun and amusement parks — especially the Studio Tour ride from Universal Studios. Erin would scream out of joy when she felt the vibrations of the songs during our morning song routine or when I would hand her a white cane to improve her walking. Anyone would have felt her happiness from her exuberant screams and giant smiles.
In the two years we spent together, I slowly gained her trust. I learned that if I tapped her nose gently, she stopped biting people immediately. I learned that her rabbit doll gave her comfort and peace of mind. From the endless hair-pulling, biting and pinching, I learned that those actions did not mean she hated me; it was simply her way of communicating and expressing herself.
But the greatest moment came when I finally learned that she trusted me; I’ll always remember the day that she quietly reached out into the air and held my thumb. I dedicated my Saturdays to spending time with Erin not out of moral obligation, but out of a genuine friendship of love and c0dependence.
But I wish I could have been a friend to Junho like I was to Erin. I wish I had fought for him, for him to have a voice and part in our family. I wish I knew more and how to tell my aunt that Junho wasn’t different or abnormal. Although we now live thousands of miles apart, I wish I could tell my family that Junho is not “less human” because of his differences. But I believe it isn’t too late to fight for Junho. Despite the miles that separate us, I will aspire to change my family’s minds about Junho and encourage them to join the conversation about autism and neurological disorders.
I joined Spectrum: Autism at Cal to create a bridge between those with autism with others not only within our community but also within our friend groups and families. Autism is something to be understood and embraced, and I want to advocate for that within our community. I aspire to break the status quo, the misunderstood stereotypes and the negative views surrounding those with neurological disorders because the small differences in the brain fail to justify the dehumanization of those with special needs. One day, I hope that we can all come together to learn from each other to include autism in the conversation of love and acceptance. This is why I care and why I advocate.
— Helen Lee