I read an article on once while in college that described autism like living in a concrete room. I don’t see autism that way. To me autism has a more personal name…my son’s name. My firstborn’s name. Avery, a name meaning loyal, noble and bearlike, the most fitting name for such a child. And though Avery does live in his own world, it is most definitely not made of concrete. I like to think of it as made of paint, mutable and changeable as water. Fluid with beauty, fears, desires, ideas, angels. Made of all the colors imaginable. He lives here most of the time allowing us glimpses into this beauty he has created bits at a time, gracing us with his dancing eyes and light laughter.
Avery’s world is impervious to our soft decay. His is a place of wonder and beauty. Purity of the highest level. What I would imagine heaven to be a place of. It is as if his soul was created too delicately to belong in our harsh reality.
At times it may see that Avery is floating like a satellite in a lovely sky, no clouds to cover him. It seems as if he reaches out from up there, from the blue of the sky, and he joins us down in the dullness of our gray. We live for those moments. We train for them like Olympic trainers working for medals. These moments are no less precious. No less as coveted. Sometimes they are fleeting, passing by us like the wind. Not always seen, but always felt, always moving our souls, always filling our hearts with joy. Always leaving us a bit happier, a bit more enlightened, a bit better off than before.
Our world is far less beautiful than Avery’s, filled with gray skies, the greenness of envy and money, the darkness of death and rage, the redness of war and pain. A world filled with corruption, crime, poverty and fear. I realize this as I look about our clutter-filled house. I know if must be so much more beautiful to be where he is. That is what makes the moments he chooses to emerge from his Monet-esque universe to share a Beatles song with us or a dance in the snow all the more precious.
I started out this journey of being Avery’s mom thinking I was always travelling down a road always toward some goal: Avery walking; Avery talking. But, autism isn’t a road. It is much more like diving into a painting. You get a bit messy sometimes. You wade in. It is the brown of the food he eats, the orange of his baby blanket, the blue of his eyes, the rainbow colors of a box of Crayolas used to draw on his legs, the pink of his Pez, the black and white checks on his fedora, the turquoise water on a warm summer day perfect for splashing into, the mirror-like silver of the DVD’s he loves to spin, and the purple and red of his beanbags the most prized of his possessions.
Avery, my autist. My bit of magic. He has taught me what life and love is all about. He forgives me everything. He loves with his whole heart. He feels things, sees things, senses them somewhere deep in his soul. Avery has taught me many things. That joy isn’t always found in faraway places. Sometimes it is simply in the spinning of a colorful top or in the dipping of a pink strawberry cookie in the red barbeque sauce, that the Beatles are still amazing after all these years, and that some things do not have to be verbalized to be understood, they simply have to be felt with the heart.
Autism—a mysterious world where the unknowns still outnumber the knowns. A syndrome whose manifestations are many and whose etiology is suspected of being multi-causal. The word autism still conveys a fixed and dreadful meaning to most people—they visualize a child mute, rocking, screaming inaccessible, cut off from human contact. But to me, Autism—beauty, grace, joy, laughter, love, challenges, Pez, three piece chicken selects, movie credits, fedoras, Avery and of course, all the colors.