A Mother Tells Her Son about His Asperger’s, Facing the Truth About Herself As Well

Coming Clean to My Son

My eight-year-old son stands two feet away from me, fidgeting with the rungs of a wooden chair. His hazel eyes are averted from the three other occupants in the room. My husband and I, along with a close friend, have gathered on this cold Saturday for a solemn purpose.

“Honey, we need to tell you something,” I begin.

Then I stop. The room goes silent, and in that instant the English language recedes from my head. I am dry-throated and mute.

Four years have passed since my son was diagnosed with Asperger’s syndrome, a social communication disorder on the autism spectrum. It’s been four long years of hushed conversations with doctors and educators, of pre-appointment phone calls to remind a specialist, “Don’t mention Asperger’s in front of him, please. He doesn’t know about it yet.”

Sometimes I tell people that mothering a child with Asperger’s is like being locked in a room full of fireflies with baffling names like “Theory of Mind” and “Executive Function.” They hover and wink at me through the dim light, and I’ve been told that I can’t leave until each one is caught. Every time I pluck “Dyspraxia” from the air, “Nonverbal Communication” escapes from my jar. “Self-Esteem,” “Anxiety,” and “Rage Cycle” are especially elusive bugs, and if I can’t figure out how to capture them myself, what right do I have to introduce my son?

In the beginning, he was too young to be told. His rare but plaintive questions about the need for weekly therapies only arose on the way to those therapies, and in an effort not to crash the car, I kept my answers as vague as possible: “because it helps you with things that are hard for you.” Then I’d insert whatever distraction happened to be on hand. “Oh look! An eighteen wheeler.”

Over the years it’s grown more difficult to answer his questions without the framework that the disorder provides. He doesn’t understand that there’s a good reason why “Social Relationships” and “Pragmatic Language” are hard to grasp, and he’s begun to blame others as a result. When he neglected to mention a serious injury one day and then fled a teacher he didn’t know on another, I began to worry about his safety. I pictured him older, dying alone in his apartment because he wouldn’t know how to seek help or the way a police officer might some day misinterpret his fear. We couldn’t expect him to advocate for himself if he didn’t know what to advocate for. The time had come to tell him.

I look to my husband and then to Anne, the mentor and friend who is here to provide support— mostly for me. She knows how I hate hard conversations and how a simple disagreement can throw me off for days. Too often my tongue feels like a liability, like something I should take out insurance against. I plead for help with my eyes.

My son’s hands continue to work the back of his chair. He explores the wood grain with his fingers like a blind person memorizing a stranger’s face, and I worry about what he is thinking. Earlier in the week I told him that we had something important to discuss. A spark of concern filled his shifting eyes.

“You’re not in trouble,” I said. “We just need to talk to you. It’s nothing bad.”

He gave me a sidelong glance of filial disbelief, and I wondered if his social awareness is more acute than he lets on. To me this moment is bad, almost worse than the day he was diagnosed. I’m about to pluck my innocent child out of the realm of typical kids, fly him over a chasm as deep as the Grand Canyon, and deposit him in a precarious place of labels and neurobiological differences. This time there’s no expert on hand, and if I don’t hit the landing right, he may see himself as damaged or disabled. He could use his diagnosis as an excuse for the rest of his life.

From the beginning of our journey with Asperger’s, I’ve wondered how other parents usher their children through this inevitable rite of passage. Some children respond with denial and anger. Others don’t find out until they’re teens or adults. Many accept the news with relief. They’ve known all along that they’re different. I hope my son finds his place in this latter group, but just in case, I’ve done my due diligence. I’ve combed the internet, trolled through books, and created a five-page, single-space document of tips to help me choose the best words to say.

And yet the silence in the kitchen drags on. The air is filled with the warm aroma of baked eggs and melted cheese. The quiche and a green salad sit on the counter, awaiting the conclusion of a discussion that may never start. I stutter, and my son glances up at me. For once I have his full attention, but the words I need are gone.

Anne pulls my son into her arms and picks up where I’ve left off. Released from the burden of disclosure, I find myself thinking back to our beloved striped cat who died the previous year. Her heart slowly failed over the course of months, and each day I prayed that she would die in her sleep. Don’t make me kill you, I pleaded with that cat, but in the end I called the vet. And even as I mourned her loss, I resented her for forcing me to make that choice.

I resent my son a little too. I did not ask to be appointed the guardian of his sacred truths nor be forced to decide when to dole out the details of who he is. I don’t want to be the architect of his loss of innocence, and yet he still hasn’t noticed the Asperger’s books that are scattered throughout our house. He’s never mentioned the times when professionals have blurted out his diagnosis in front of him or the time a well-meaning teacher handed him the book All Cats Have Asperger’s in front of me. I thought my head might explode in the second it took to snatch the book from his hands.

“But mommy, I like cats!” he whined.

“That book is not for you,” I replied and returned it to the ashen-faced teacher.

Not yet, anyway, I thought.

I try not to blame him for what sometimes feels like willful ignorance, but this talk today isn’t solely about him. He is the only second grader with Asperger’s in the school district, and he’ll need to know that he is not alone. In outing my son to himself today, I have chosen to out myself to him as well. Perhaps I shouldn’t be so surprised that my mind has opted to blank out. Neurobiological disorder, indeed.

Long before his diagnosis, a pediatrician handling his asthma joked that my husband had chosen poorly from the gene pool; he’d married a woman with her own history of asthma. I was offended by his glib remark, but it turned out that the doctor was right. My husband had chosen poorly—we just didn’t know how poorly yet.

A year later we were hit with the diagnosis, and I searched fruitlessly for answers. Had it been caused by a vaccine? The X-ray before I knew I was pregnant? Was it environmental? Prenatal? Then one night online I stumbled upon Simon Baron-Cohen’s Autism Spectrum Quotient test for adults. Those who score a 32 or higher have an eighty percent chance of being on the spectrum. The first time I took it, I scored a 32. The second time came back a 36. The last time I let it all hang out and scored a whopping 40 points.

I stared at the computer screen and thought, Holy crap. He got it from me. Thirty-seven years of life would have to be reconfigured. Since then, I have swayed like a pendulum over my past with a new understanding and clarity. In many ways, the knowledge made life easier.
“I’m never ordering take-out again,” I informed my husband, who had teased me for my reluctance to talk to strangers on the phone. With a hint of self-righteous humor, I added, “That’s what you get for choosing poorly from the gene pool.”

In other ways, I wrestle with Asperger’s every day. I must remind myself to ask after friends’ wellbeing. Interpreting others’ motives in emotionally charged waters can keep me up all night. A dinner party requiring small talk might as well be a legalized form of torture. My son obsesses over trains; I struggle to reign in my enthusiasm for books. He is absurdly partial to the color green. Nearly all of my clothes are blue. We each have tempers that would cow a lesser man than my husband.

In other words, I have my own fireflies to catch.

In the kitchen, Anne begins by reminding my son how all people have different strengths and weaknesses. He listens even while he fiddles with the buttons of her shirt, but her examples don’t ring with precision in my ear. I interrupt to clarify a point and discover that the English language has returned.

My son moves to sit on my lap. He is big for his age, like a puppy with huge paws, and he’ll be tall and handsome like his father some day. I thank the universe for this small blessing. Girls may not understand him, but they’ll be drawn to his good looks, especially once he learns to clean the previous meal from his face.

His solid weight presses down on my legs, and I wrap my arms around his torso. He leans back against me and we are cheek to cheek, our eyes docked in the emotional safe harbor of the hardwood floor below. I tell him everything that I’ve practiced, everything that I want him to know about the wonderful, unique person that he is.

When I’m through, he seems neither devastated nor concerned. His heart beats calmly beneath my hands. “Do you have any questions for us?” I ask.
He shakes his head, and we leave it at that. Anne tells me he needs time to mull things over, and that afternoon he has a play date with a friend. At dinner, he is thoughtful and quiet. But on his way to bed, his foot collides with his dresser, and he says, “you know, the thing about kids with Asperger’s is that we stub our toes a lot.”

“That’s not Asperger’s,” my husband tells him. “You’re just a klutz.”
My son accepts this correction and moves on to his next assumption. “The other thing about kids with Asperger’s is that we have bad dreams a lot.”
My husband and I exchange a look. The tightness in my chest loosens, as if I’ve held my breath for days or possibly even years. He may not have the specifics of Asperger’s down, but he’s open to exploring his new realm. The rest will come with time.

Long after he’s fallen asleep, I sit on the side of his bed. “Don’t be afraid,” I whisper in his ear. “You aren’t alone.”

And finally neither am I.

Allison D. Johnson lives in Carbondale, Colorado, with her remarkable son, amazing husband, and a cranky cat who most definitely has Asperger’s. She can be reached at www.allisondjohnson.com.