“But he looks so normal.”
I’ve been hearing this a lot lately. Not about Simon, although it does happen from time to time, especially now that he’s talking more.
No, I keep hearing this about George.
To be fair, George is an odd-case, even in the world of autism. Multiple doctors and therapists all agree that he doesn’t present like most ASD cases and no one is 100% sure that he has autism.
But none of that really matters. He has the diagnosis. I have the reports. Medicaid has been notified. (Which reminds me, I need to call them, because they can help apply for DDA assistance for both boys. I must find time to do that. Yeah, right.) His pediatrician has been notified. All his therapists know, and here in a few months we’ll start talking with the school district about his transfer into the developmental preschool.
Regardless of how he looks or how he acts, he IS autistic.
I run into a lady a couple of times a week. Her daughter is slightly older than George and is also autistic, and more impacted than George, although not severely so. She’s a nice lady and her daughter is very sweet, but it seems like every time I see her, she says something like:
“He looks so normal.”
“Will he even get into developmental preschool? He doesn’t seem like he would need it.”
“He doesn’t look autistic.”
For my own sanity, I have to believe that she really thinks she’s being kind by saying these things. That she thinks it’s a compliment. And she’s probably looking at a kid who has more social and communication skills than her child and is feeling wistful, if not jealous. I get that. I’ve been there. I’m still there when I see typical kids my boys’ age. I get it.
But it’s driving me crazy. I worry that maybe everyone else is going to decide that he’s “normal” and pull him from the services that he so desperately needs. I worry that the asshole doctor I yelled at a year ago was right (and, man, wouldn’t that just piss me off?). I worry that if George doesn’t have autism, then what is going on with him? What if it is something worse, like a tumor or some weird neurological disease? It’s gotten to the point where I feel like I need to carry his diagnostic report with me so she can read it.
Mostly, though, it makes me sad. Because, yes, in a lot of ways, George does seem “normal”. He’s a sweet little boy who loves to climb and do flips and snuggle. He loves to color and watch ‘Super Why’. He dances and tries to sing. He thinks farts are the funniest things ever and will be the first one to tell you “Simon pooped”, even if he’s the one that did.
This lady, though, doesn’t see the rest of it. She doesn’t see the little boy who feels things so deeply that he almost hyperventilates if you raise your voice to him. Whose emotions are so big that he will slam his head onto the floor, wall, table, hard enough to leave bruises on his forehead, whenever he gets upset or mad. She doesn’t see him pinch himself. She doesn’t see him stim. She doesn’t see him spin plates and bowls or turn tricycles over so he can spin the tires. She doesn’t get to see that part of him. Adam and I do. We deal with that. We try to teach him to bang his fists instead of his head or how to count until he calms down. That’s on us, and his therapists, and his teachers. This lady, she doesn’t get to see that part.
She just sees that he looks “normal” to her.
What is “normal” anyway?