“How’d Benji do?” I asked the volunteer chess leader, a middle age man with a beard and thick glasses. I had dropped off my twins, Benji and Micah, an hour ago at the library chess club, our first time visiting. Well, “dropped off” is generous: I stayed at the library the whole time they were in the back room
“Well,” the man paused, pushing up his glasses. “He played three games—“
Wow! I thought. That’s great! I’ve never gotten him to play more than one at home.
“—but he didn’t really want to participate after that. He wouldn’t really talk, and he wandered around the room…”
Oh. Crap…I closed my eyes for a brief second, guilt dropping like a fifty pound weight in my gut.
I forgot to disclose Benji’s Autism before I left the room.
Well, “forgot” is being generous. In that brief moment when I dropped my 9 year old twins off, I did forget. But I thought about it in the car as we drove to the library.
And I debated in my mind, going over old ground, deep ruts, traveled every time I take my son to a new class, event, or club:
Do I tell?
Can he “pass” for “normal” this time?
Why did I just think that? There is nothing wrong with being Autistic! Stop judging your child!
But if I don’t tell, will they judge him as a “bad kid” if he has a hard time?
If I do tell, will they treat him differently? Will they coddle him?
What if they speak to him slowly and awkwardly like he has a hearing or cognitive disability? Wait, hedoes have a cognitive disability. No, challenge, not disability. Is it a disability?
I need to tell them.
But what if they don’t understand what Autism is?
Ugg…why is this always so difficult?!
Ultimately, whether by design or accident, I didn’t disclose—and that was a mistake, one I quickly remedied:
“Ahh, I’m really sorry I didn’t tell you before but, Benji is…he’s Autistic.” I spoke quickly, bracing myself for the man’s reaction.
Disclosure always produces a reaction, usually subtle because people want to be polite, but I’ve experienced this situation enough times to see the gamut of responses: a slight recoil, pursed lips, a wrinkled brow, crossed arms, a confused gleam, a head tilt, recognition, a generous nod.
This time? The man broke into a wide smile. “Oh! I wish you would have told me! That makes so much sense. I’ve worked with Autistic boys before. I’m a Boy Scout leader!” He tucked his hands behind his back and gave a proud little bounce on his heels.
“I wish you would have told me,” he repeated.
I nodded, apologizing again as I swallowed back the lump in my throat, a lump filled with so many polarizing emotions.
I was grateful for his recognition and acceptance of my son’s differences.
I felt terrible that I had forgotten in the busy-ness of dropping the boys off.
And I felt ashamed, so ashamed, of that inner debate that I engage in every time I face a new situation or activity with my sweet boy.
I’m not ashamed of his Autism, really and truly I am not. I love my son for who he is. When we’re at home, I rarely think about his Autism.
But when we go out—to Vacation Bible School, a new soccer team, chess club, Lego day at the Children’s museum—I am afraid.
I’m afraid of what other people will think, plain and simple.
And I want to scream to my raging inner debate, “SCREW WHAT OTHER PEOPLE THINK!”
But I can’t say “screw my son” because my choice to disclose or not disclose always has consequences for him.
He can’t advocate for himself yet so that is my job and privilege as his mother.
My son looks “normal”: He has beautiful hazel eyes, a sweet smile with big man-boy teeth, and quick, wiry limbs; he loves to sport Pokemon shirts and wear blue tennis shoes.
But he has an invisible disability.
Disclosure makes his Autism visible to the world.
And somehow, it always feels like exposing something too precious for public view, like stripping naked in the middle of a crowded football stadium.
Because when I tell you my son is Autistic, I’m really saying this: “Please accept him. He’s a little different. But please, please accept him.”
There’s a whole world of vulnerable in sharing our truth with the world.
My son is precious and I want to protect all tender parts of his soul.
But I can’t shield him from the world, cloistering him away so I feel better about myself for keeping him “safe.” It is my job as his mother to help him live in this world, the “normal” world that doesn’t always understand him.
I hate disclosure. It’s been nearly two years since his diagnosis and disclosure is still really hard. But I do it anyway because I want people to understand Benji on his own terms and accept him with their eyes wide open.
One day, I hope the inner debate will fade and I won’t blink twice before telling teachers, coaches, or volunteers about my son. But until then, I’m going to swallow hard, be brave, and show my son what it means to be an advocate for “different” in a world that expects “normal.”
What about you? Do you hate disclosure?
What have you learned–good or bad–about what it means to disclose your disability or your child’s challenge to the world?
Please share your story below or on Facebook.