The Moment My Son Was Diagnosed with Autism.

{This post was written by Sarah Driscoll of Sarah Driscoll Photography located in Massachusetts and these were self portraits she took with her son, Luke}. Here is their story. 

It was a cold December morning. The world felt raw and unattached as I swung my feet out from my comforter and onto the chipped hardwood floors. 6:00 am and we had to be into the city by 8. The thought of trekking through the traffic and breaking my son’s extremely strict, never-goes-a-day-without-sitting-in-the-same-spot-on-the-couch, morning routine was enough to weigh down my shoulders. In my happiest voice, I said “good morning baby,” in a long dragged out tone as I lifted his covers and peered at his trembling bones.  Every morning, when the covers are lifted and the night’s warmth is pierced with morning air, his skin trembles and turns a shade of my blue that most people would never notice. But I notice. I always notice. 

I trace his cheek with the outsides of my fingers, giving him a few more moments to acknowledge the day. This was my way —always my way— of giving him time to adjust and convince him that today will be good — that he should be prepared to smile. Isn’t it funny how we create these routines, and these expectations without ever knowing we are doing so. Without ever seeing the why….

The morning routine continues — following the strict schedule that Luke has created and I have enabled until finally, we are loaded into our white mini van with the heat turned higher than necessary until suddenly I realize my cheeks are burning. Slowly, our van is swarmed by cars and taxi cabs, and the sound of honking horns and vibrating sterios reminds me of where we are headed. I glance out my window at men beneath houses made of boxes and blankets, and holding signs asking for food, and I think to myself…“well…it could be worse.”

I glance over at my husband who has maintained the same straight face he always has when faced with potentially life-altering moments such as these. When I try to chat about what could come of the day, he greets my words with “I don’t knows.” 

Maybe someone will finally know. After all, isn’t that why we are here? Heading into the city– the renowned Boston Children’s– so we can finally talk to someone who knows. Will anyone know?

5 hours of testing later,  broken up only by one snack and one walk in the hallway, we were told to come back tomorrow to hear our fate. As if they didn’t already know.

On the way out, as the cold air pierced my skin, I thought about how well my son behaved. How good he did. And how there is no way, after having such a great day with no tantrums, that anyone would ever see what I thought —maybe— I saw.  I was almost…disappointed. I didn’t want to leave another appointment with them not seeing the truth about my day to day life with my boy. Would these struggles always be our little secret? Would they never have a label? Would we continue through this life, always walking on eggshells and preparing for the next tantrum? Would we always be at party –in a corner– as he whispers in my ear how scared he is, all the while everyone telling me how well behaved he is.  Gosh, if they only knew. 

As we rounded the bend on our walk back to the car and the air hit me from a new direction, my mind went still The truth is coming, I thought. I pulled up my hood, grateful to be anonymous and that no one could hear the silence inside my head.

As the next day came (as they often do), we sat in the office, sipping our almost-cold coffees when she finally said it aloud “Luke has Autism.”

She went on to tell us his strengths and weaknesses and his other diagnosis of Developmental Coordination Disorder. She went on to tell us how sweet he is. And how he is extraordinarily social for a child on the spectrum. She went on to reassure us that we will have all the services and support we will ever need. She went on to tell us everything we already knew about our baby. She went on. And on. And on. And on. And on.

Silence. Everything, silenced. There was not a single movement in the room except for my murky, trembling hands, and the shift of the doctor’s leg as she uncomfortably waited for us to speak. There was no way to spit-shine this moment. Or to smack a bandaid over this cut and call it healed. This was not a death sentence nor was it an invitation to some renowned club. It was just— the truth. The bare-boned, matter-of-fact, truth. Suddenly one of my hands clamped the other and my trembling ceased. My entire body went silent. Then..out of no where, my mouth spoke the words, “thank you.”

 

Spectrum Inspired.