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My Brother With Autism Lives in His Own Galaxy, and I'm Lucky to Get to Experience It

15/07/2020 - 04:20 PM

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"Alex, let's go!" "Alex, come on!" "Alex, nos vamos!" I have always rushed my brother around. At 7 years old, I carried his chubby 2-year-old self up the playground with all the strength I had, his feet compressed in too-small socks, ready to push him down a slide. At 10 years old, wearing a bathing suit with a pail in hand, I grabbed Alex's hand and rushed him away from his VCR player and into the car for a beach day. Time continued to pass and I rushed him away from things and rushed him closer to other things, half a sister, half like a disciplinarian. We were like yin and yang, swirling around each other, constantly together throughout our entire childhood, understanding and knowing each other without ever really embarking in conversation.

My brother has autism, a condition that sometimes causes him to act differently from other people, differently from people's expectations of what "should be" normal. The "should" is key in that sentence — through being lucky enough to know my brother, to have been shaped by his intricacies and idiosyncrasies, I have understood we all fall somewhere on a greyscale. Autism is a hell of a lot more complex than is often spoken about, and this is a fact that has become more clear to me as my brother has become an adult. There is no doubt that the condition affects greatly people, and makes many situations and activities more difficult: Going into a bright and noisy shopping mall, breaking a pattern, eating certain foods, touching certain textures, social interaction, eye contact, or even overstimulation caused by TV and computer screens. But something I have learned through 26 years of living with my brother Alex is that we all have to forget about the "should's" and the word "normal."

With a deep understanding of the significance of my brother's condition, I have always been protective of him: in the hallways of our same school, or walking through a grocery aisle, attempting to make a barrier of myself between him and the ignorant stares some people threw our way. People are sometimes scared of what's different, of what challenges their perception of reality, or sometimes I guess they just want to stare. But my family and I made our own little world, a safe haven, for him and for us. A vacuum-sealed spaceship to keep us safe from the asteroids, a place where only true understanding would reign. Now, at 26 and 21, he is not a chubby, dimpled baby any longer – he is a head taller than me and our resident teddy bear. But we will always be protective of him. That never goes away.

There are things that my brother can do that I could never do. He has a collection of movies he has accumulated, hundreds, maybe even a thousand. He has catalogueued them all in his mind by name, director, actors, and film studio. He probably has many more thousands of movies catalogueued in his mind, and he remembers movie scripts word for word, too. His memory astounds me. He is always, always kind and loving with a golden smile that immediately makes people happy when they're around him. He says funny things sometimes, too, like when he randomly speaks in Spanish (saying "amol" instead of "amor"), when he gets tickled in the neck and can't stop laughing, when he surprises us all by making jokes, by offering a glimpse into his glittering, cryptic galaxy. Because that is just what his world is. Upon diagnosis, this galaxy tumbled my parents into a dark abyss where sometimes they felt like they were falling through deep space. Other times they were startled with a bright breakthrough, a white hole into my brother's mind that kept them moving forward. It has been the ride of all of our lives, in a galaxy that seems to expand and shrink, breathe deeply in and out, as we have been tossed into a lifetime of learning to understand Alex's brain.

At 21, Alex still likes the same foods he always has: he loves pizza, Chick-fil-A, salads, and cookies. But he has learned to try everything, from pad thai to arepas, a huge advancement from when he was 7 and would only eat chicken nuggets and french fries. He is maturing – his eyes have begun to communicate that he is aware of his adulthood, and even though he still loves "kids movies" like Ratatouille (it's my favourite movie too though, so maybe it's a family thing), he'll request more grown-up movies now, like The Avengers [3]. He has friends from school that he sees sometimes within group activities, accompanied by my mom, and he is equally curious about and unfazed by our family antics. Me and my mom love to scare each other (like popping out from behind a door to startle one another) but Alex never gets scared, and I think that's amazing. He can swim underwater for what feels like hours, moving with grace and serenity. He loves music, and has refined taste, too. Pavarotti is his favourite, particularly "Nessun Dorma," but he enjoys all kinds, like "Calma" by Pedro Capó, and even Tom Jones.

My brother isn't always easy [4], and when he wants something (like the iPad) he makes it very clear that he wants it, even needs it. Those things don't necessarily go away with time. But any struggle that comes with living and loving a person with autism absolutely pales in comparison to the lessons, the soul-searching, the lightning flashes of clarity, the pain, and the joy that brings you a bit closer to understanding what life is about. Life isn't perfect, and my family learned that early on. But it taught us, eventually, not to demand that perfection in the first place. Why do we all want to be uniform perfect blobs anyway? And Alex, eventually, with a lot of patience, taught me not to rush towards perfection so much. I learned to sit with him sometimes, peer into his world, watch a movie with him. And I'm just glad that he had patience with me.


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https://www.popsugar.co.uk/parenting/how-my-brother-with-autism-shaped-my-childhood-47617442