Grayson, my Autistic seventeen-year-old son, has been home from boarding school this week getting his wisdom teeth removed. He doesn’t very speak often of his Autism, but this morning, he asked me–quite out of the blue–what it was like when I found out he was Autistic. He wanted to know if it made me like him any less. His question stunned me, simultaneously warmed and broke my heart, and instantly transported me back to a time, roughly eleven years ago.
In honor of Grayson and Autism, I’m sharing a portion of my (unpublished) memoir. I know many people besides Grayson have wondered about this particular part of our journey. My writing begins the moment just after my husband and I received his diagnosis…
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“At any rate, when Dr. Ramirez declared Grayson to be Autistic, I questioned her, but didn’t doubt. I knew that she knew all I needed to know.
Of all the questions we asked that day, only one stands out in my mind: How could my son be Autistic? He made eye contact and gestured appropriately; he didn’t flap his hands or make strange, guttural sounds.
But truth be told, there was a larger, burning question hiding behind my question, peeking out with one timid eye like my son: How could I, his mother, have not known? Although I’d danced around the idea of Autism numerous times, Grayson never seemed to match the stereotype in my head.
Immediately, my internal critic was off to the races, thrilled to possess yet another piece of evidence that proved my maternal ineptitude.
As if reading my mind, Dr. Ramirez leaned forward, her eyes brimming with tenderness. “The thing is,” she explained, “if you’ve seen one Autistic kid, you’ve seen…one Autistic kid. They are all that different.”
My internal critic started stammering uncomfortably as the doctor continued, “Even I have a hard time identifying kids on the spectrum, and I’ve done hundreds, maybe even thousands of diagnostic tests.”
With these last comforting words, my critical inner voice vaporized into thin air.
It took me a long time to fully accept Grayson’s diagnosis. Autism existed “out there” and belonged to anyone other than us. It reminded me of a thrift store t-shirt worn by countless others that smelled like a conglomeration of drugstore detergents. Someone else’s friction had worn the fabric thin, and others’ experiences had raised balled cotton pills. No matter how often I washed it in our detergent or made Grayson try it on for size, it never seemed right. I tried to make the word leap from my tongue, but it refused. I couldn’t make it mine. I couldn’t make it ours.
So I stashed it in the back corner of a dark closet. Instead of referring to it by name, I spoke of Grayson’s “behavioral issues” or even his “special needs.” Eventually, I transitioned to mentioning his doctor thought he might have Autism, then graduated to admitting that he actually did. It took me much longer to assert that he was Autistic, and many years passed before I uttered the word aloud in his presence. Instead, I whispered it behind a concealing hand, mouthed it like it were a dirty four-letter word, and cringed should anyone blurt it too loudly.
Again, it’s not that I disagreed; I just never wanted Grayson to feel different or less-than—like me. It seemed unfair to bundle such a beautiful, complex soul into a single reductionistic term. To me, he was infinitely more.
I initially refrained from using the word, hoping that if I left it untouched in the back of the closet, perhaps one day, I could return his diagnosis for a full refund or, at least, a partial store credit. I think I secretly believed that if I ignored it long enough, we’d one day pull it out to try it on for size and—much to our delight—realize it no longer fit. Part of me felt confident that, with time, Grayson would outgrow his “little phase.”
I asked Dr. Ramirez one final question before leaving her office that day: Why does it even matter? There’s no cure, no treatment, so what good is a diagnosis?
I eventually would learn that diagnoses, while potentially labeling and limiting, can also be highly efficient. I could communicate what would typically take pages to convey with a single word. I could succinctly explain Grayson’s behavior, thereby silencing even the rudest of strangers, like the time Grayson shoved Reagan in Costco and sent her sprawling in front of an old woman’s cart. She waggled a crooked finger in his face and chastised him for being a “bad boy.” I expressed that he had “difficulties,” and her scolding finger then pointed my way. “Well then, next time, leave him at home,” she croaked, wobbling away. I deliberated momentarily, then chased her down. “I’ll have you know my son is AUTISTIC,” I all but yelled before turning on my heels and leaving her sputtering in the aisle.
Of course, I hadn’t changed her heart with my impulsive declaration, but for the first time, I had taken possession of the word. Made it mine. Made it ours.
*
As Grayson neared adolescence, he would begin studying his face in the mirror. Lamenting its perceived ugliness, he would tearfully demand a face transplant or that I burn his face off with acid. He would question why no one ever invited him to their birthday party, wonder why his siblings had multiple friends, and he not even one. After exploding like the Hulk, Grayson—upon coming to his senses—would behold the wake of his destruction. Buckling to the ground in remorse, he would punish his ugly face over and over with two fists while dissolving into a heap of howling, lamenting sobs: Why am I such a bad boy?
Dr. Ramirez said I would know when the timing was right. She told me Grayson would find a way to let me know when he was ready to learn of his diagnosis—and she was right. One night, while sitting on the edge of his bed post-tantrum, he would launch into a stream of unrelenting questions: But WHY am I different? WHY do I struggle with everything? WHY do I feel so angry? His questions broke my heart, for I constantly wondered the same about myself.
At that moment, resolve would settle over me like Grayson’s weighted blanket, and I would know the timing was right. It would become crystal clear that the most painful, loving, and merciful thing to do was speak the word—his word—out loud. I would say it firmly, sympathetically, and with pride “Autism. Autism. Autism.”
In time, I would educate him about its implications and he would receive the information as calmly and matter-of-factly as I would present it. The word that had long felt foreign in my ears would ring intrinsically true in his.
From that night forward, I would no longer treat his diagnosis like a crumpled thrift-store t-shirt. I had dug it out of a dark closet corner, and lo and behold, it fit Grayson like a glove. After that night on the side of his bed, the word would slip easily off my tongue.
If my son could own it, then so would I.”
*
Back to mine and Grayson’s current day conversation, after I explained that his diagnosis could not have possibly made me like or love him any less, he shrugged his shoulders and offhandedly remarked as he turned to walk away, “It’s fine. I was just curious. I don’t really think Autism feels like Autism anyways. It just feels pretty normal to me.”
I had to agree. Each and every part of my son is completely and fully…simply my beloved Grayson.
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*Update July 10, 1:45 pm – I just dropped Grayson off at the airport curb to return to his out-of-state school. The plan was for me to park and meet him at security (we’ve been incrementally working toward him traveling alone). But by the time I got inside, he had printed out his boarding pass by himself and made it through the majority of the security line. After some deliberation, he decided to attempt the process alone. I watched from the upstairs railing as he loaded his bag onto the conveyor belt, took off his hat, looked right and then left to see whether other people were taking off their hat, ask the agent for help, and finally, put his hat back on his head. For several moments, his head was a constant flurry of left and right turns as he looked to the hoard of surrounding passengers for cues. At last, he passed through the x-ray machine, threw his backpack over his shoulder and disappeared into the elevator tunnel downward toward the train.
Several minutes later my phone is ringing. Grayson is at the gate, bored, and has changed his mind. Can I please get a gate pass and come sit with him? No, I inform him, I can’t get a pass unless he’s present, and we don’t have enough time to go through security all over again. He hangs up and within seconds my phone is ringing again. Irritatedly, he gripes that he forgot his watch and water bottle back home. Can I send them in a package? The third and most recent phone call was to request money for a steamer and a bottle of water, all irritation already forgotten. I hang up and transfer the money to his card.
Now, really alone, I wander over to the nearest coffee shop and order an oat-milk latte. The second I find a private seat, warm tears begin forming in the corners of my eyes. A miracle has just unfolded before me. A moment I’d never imagined possible. My very normal seventeen-year-old Autistic son has maneuvered his way through an international airport and will soon be departing to another state where he lives most days without me.
But until the moment his plane lifts off the ground, I’ll be sitting in the corner of an upstairs airport coffee shop–worrying, savoring, cherishing, choking back the big lump in my throat, and trying to figure whether the hollow in my chest feels more dead or vibrantly alive.
