Originally Published November 20, 2017
While you don’t get to learn about the unique way autism can affect each life until it affects yours, you hear about it as a concept before it ever does. The word comes up in many instances and, from the way it’s presented, feels like something every parent should dread.
So the mere thought that your child might be on the spectrum in some way can be devastating before you even understand what it is. The word itself takes on so many conflicting meanings and while you’re not sure what it will even mean to you, you just know it’s something you’ve been conditioned to fear.
As is often the case, I noticed my son’s potential autism through missed milestones. It’s a slow burn that accumulates over time. Some delays can be ignored, with a hope for the future. Some can not and need to be addressed sooner, rather than later. As a whole, though, they all become things that start to consume you.
This in-between time period was easily the hardest to overcome. I was aware that my child was demonstrating limitations, but to acknowledge them would feel as though I wasn’t being supportive. Saying your toddler can’t wave hello yet, even if you know they can’t, feels like a parental surrender.
Even experts and professionals will tell you that “anything is possible.” It conjures up bizarre images of waking up one morning to your baby paging through the Wall Street Journal and fist-bumping you hello. You go along with it because, after years of scare tactics, you’re just happy they’re not telling you that your kid definitely has autism.
It leads to some strange moments, though. I’d be on line at the supermarket and the cashier would turn to my then-two-year-old in the cart. With a smile, she’d say:
Hey there, fella. I like your shirt.
Then she’d stare at him. He’d stare back. I stare as well. You have two adults staring at a toddler despite the fact that there was a 99% chance he would not respond.
Yet… there’s that one percent chance that he’ll just spring up and say, “Oh, hey there. Good to meet you. I’m two. I’m usually pretty quiet, but figured I’d say hey to you. Sup? You watch Breaking Bad?”
So you wait. As insane as it feels, you wait. I did. I did it with pictures too. Taking group photos is an ordeal in itself when your child has autism, but it’s far worse when you’re in that wait-and-see holding pattern. You have to endure frustrated professional photographers repeating over and over and over…
Up here, buddy. Look at me. Smelly feet. Look. Whoomp! Whoomp! Over here. Hey! You like Elmo? Look at Elmo. Look here, buddy. Smelly pickle feet! Up here, buddy.
Many years ago, we went through this and it was one of the first times I finally had to step in. I turned to the guy and said, “Yeah, he’s not going to look at you. Just take the picture.” If I hadn’t, we’d probably still be standing there as he maniacally waved an Elmo puppet at us.
That time period can feel dark but with a sense of self-delusional comfort. On one hand, you understand very little about what’s happening to someone you love. It tears you apart.
On the other hand, you still don’t technically have a child who’s on the autism spectrum – a scenario that you’ve been taught to think of as the worst thing that can possibly happen. So you keep waiting. Keep your head down and just keep going.
Waiting for those missed milestones to suddenly spring up is like preparing for a guest that you’re not sure is coming over. You clean the house from top to bottom. There are sparkling floors, plug-in air fresheners, and a slew of hors d’oeuvres. As the clock ticks down, you eagerly sit at the front door, staring as you hope for it to open.
You remain there for, what feels like, an eternity until, finally, someone comes over, puts their hand on your shoulder, and sympathetically informs you, “I don’t think they’re coming, pal.”
Your life goes on after that and, chances are, it’s a fine life. The absence of this guest doesn’t destroy you or your family. However, it doesn’t change the anxious feeling you had while you were waiting or all the fun things you had scheduled. In that moment, having everything turn out just as you planned seems like the most important thing in your life. However, that’s just how it feels when you’re in that moment. It’s how you handle things after they don’t turn out as you expected that really defines you.
Today, I have a six-year-old who is non-verbal and has autism. I say that the same way I can say my daughter has curly hair. It’s just a fact in my family. While I want to do whatever I can to help my son advance and reach his goals, I’m not wringing my hands over it like when I was waiting for, what I falsely believed, would be “a miracle”.
I know him so well today. Then, I didn’t know him much at all. He was still a baby. I never felt as helpless as I did during that time. It makes you think of yourself as more of an observer than a parent. Answers that people usually would turn to you for are answers you don’t have. It hurts when they ask and it hurts when you don’t know how to respond. Knowing for sure, either way, is what takes a lot of that pain away.
Don’t be afraid of an autism diagnosis and don’t let the months possibly leading up to it break you. In the end, having a child with any special needs isn’t the worst thing in the world. The fog of worry might make you feel that way. But when it clears, no matter where you end up, you’ll be amazed at what the two of you can accomplish.
FROM AUTISM AWARENESS TO AUTISM ACCEPTANCE TO AUTISM APPRECIATION
Watch: James Guttman speaks to the Massapequa SEPTA about Autism Awareness, Autism Acceptance, and Autism Appreciation.
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