Loving an autistic child in an intense, sensory world

My son feels the world like a boy without skin to protect him. Warm water scalds, sock seams bite and sticky sauce binds his fingers.

He does not hear sound, he becomes it. A melody will land on his chest, flutter like a moth and shake a hum from him. If you ask him to picture an apple in his mind, he pictures nothing—because he does not know which apple you mean. If he hasn’t seen it, it doesn’t exist. If he hasn’t tasted it, it has no taste.

My son cannot see the picture you describe when you read him a story. But he can see a triangular bipyramid in a flat piece of paper. He will show you how to arrange triangles so that when you fold them up, you will have the shape in your hand.

He’s 5.

It can be overwhelming to experience the world this way. Some days start at night with screams. I squeeze him tight, which sometimes works like rebooting a computer. Other times he thrashes on the floor and just keeps screaming. I wait with him until it passes, sometimes an hour or more. I’m part witness and part bodyguard, protecting him from himself when I can.

There are costs, of course—money and time, but something deeper too. To love someone like my son makes me the one who rescues him from battle and then shoves him back in to fight. I am his headphones, his quiet corner. I am the buzzing sensation of his lips when he hums to calm down. I am also a brick wall, standing against screams, fists and overturned chairs. “You are angry,” I say, throwing him a rope. “And now you must climb.” 

My reward for my work is that I catch glimpses of the electric, dizzying, pulsating world that he sees, where sensation is all. A bright light is a slammed door and a slap to your face. If you are lucky enough to feel a piece of this world, you will understand that it is beautiful and terrible—just like our world.

When people ask me what I do for a living, I wish I could tell them the truth: That on many, many days, I am my son’s skin, feeling our world as he does and trying to help him withstand its terrible beauty.