In a way, life has always been about “why” and a search for answers. “Why” is primarily an initial reaction, a response, a defense, a sequel out of curiosity, or a prelude to enlightenment.
When I was asked by the Autism Society Philippines-Baguio to impart a message for the 2018 Angel’s Walk for Autism held earlier this month, the “Why me?” at the back of my mind started to incubate thoughts of advocacy, support, rights and empowerment, so I found myself nodding in agreement. Besides, I was pretty sure that if I had asked other family members to do it instead, my mom would have offered the most creative excuses; my sister would have cleverly cited our birth order and the social expectations of how I, the eldest child, should set a good example of accepting responsibilities and challenges for the younger ones to emulate and learn from; and our youngest would have probably stared at me in disbelief and exclaimed, “I’m still in Grade 7!”
I was in my sophomore year in college when my brother, the third among us siblings, was diagnosed with autism spectrum disorder. And as I began to make mental notes on what message I could possibly share at the Angel’s Walk, I found myself remembering an episode 10 years back with my brother at the developmental pediatrician’s office.
On that day, while the doctor was asking diagnostic questions, the kid was preoccupied with spinning wooden cubes on top of the clinic desk—as though it were the only thing that mattered. The “Why?” questioning phase (Why us? Why did this happen?), typical of any significant phenomenon, wasn’t really a stage that I had gone through. But in order to put across whatever message I had to deliver, I felt that I owed my then 18-year-old self some answers to the “Why?” question.
My parents and other siblings have been supportive of any endeavor for children with autism ever since my brother’s diagnosis, but they prefer behind-the-scenes involvement and are silent players and backstage contributors. But like any other family with a child with autism, we were familiar with the inclinations and nuances of my brother like the back of our hand. Unusual and repetitive behaviors are better dealt with when the “Whys” are identified and the preceding actions are understood as their form of expression and communication.
My brother has to walk around an area repeatedly in order to process his thoughts better. He visualizes musical notes by associating each with a particular color for enhanced recall, and makes loud banging sounds to train himself and ease the anxiety of unexpectedly hearing sounds that he finds annoying: thunder, fireworks, bursting balloons.
A typical characterization of people with autism is that they take words literally and find it difficult to understand figures of speech. My brother is an average Grade 8 student in a regular class, but he is far more linguistically creative than other kids his age. As a fan of the famous game Plants vs. Zombies, he once told me that he wished the iceberg lettuce were real. He was getting dizzy from watching how we live in a rush, how we hurry from one thing to another and forget the pauses in life that remind us to appreciate the details that make our existence worthwhile.
Autism isn’t simply a diagnosis. It isn’t just a condition that represents who my brother is or explains his behavior and activities. It is more than a mere set of symptoms and criteria that can be clustered to fit into a particular assessment framework. Autism is that special dash of color in an otherwise ordinary set of paint hues. It is our journey of ups and downs. but certainly invaluably enlightening. It is the compass that led my sister and me to who we are now, as contributing professionals to the adulting life.
Autism is that other pair of glasses that showed us a new meaning of and perspective to life and family. It is a bond that connects even the most opposite poles of society and reflects who we truly are.
In delivering remarks at the 2018 Angel’s Walk for Autism, I took the responsibility of imparting a message of hope and encouragement. We obviously don’t have wings, but our hopes and efforts for advocacy and inclusion surely lift children with autism to a higher state. Each and every participant is surely a superhero in their own ways. We have Hulk dads and Wonder Woman moms, perhaps tired and scarred but still standing and persistently making waves to pave the way for the autism and persons-with-disability communities. We have Spiderman, Flash and Ironman brothers and sisters whose reflexes are probably close to superhuman as a result of years of being on high alert just in case our siblings decide to grab someone’s hair, rearrange the items on a grocery shelf, run around the parking lot, splash in the sidewalk puddle, or throw themselves on the floor in a temper tantrum.
But more than that, we siblings are the best friends for life. We also have therapists and educators of the likes of Thor and Captain America, the symbols of freedom and nurture who act on endless efforts of safeguarding kids and providing the proper environment for them to develop and grow. We, in special circumstances, are angels and superheroes.
So when I look for the exact words to answer the “Why?” question, I stop myself because I know I’d probably spend eternity searching. But when in dire need of an answer, I just put the iceberg lettuce firmly in mind.
Rhem Austeen L. Danio, 28, is a community health development graduate of Benguet State University and is working on a master’s degree in psychology at the University of the Cordilleras. Says Rhem: “My brother has stopped calling me ‘kuya’ and now uses ‘sir’ as his term of endearment … As the advocate ‘kuya,’ I know there are [many] journeys ahead of us, but I hope I would be able to do my best all throughout.”