Sometimes autism looks like this.
Over a year ago, I was sitting in the lobby of one of Billy's therapies when a well-meaning grandmother of another child remarked about Billy, “He's such a beautiful child. It must make it easier that he doesn't look disabled.”
At the time that she said that, Billy had his nose stuck down into the fake potting soil of the fake house plant in the lobby and was singing something to the plastic tree. I don't know what that looked like to her, but that's what autism looks like in our house.
But I get her point. Those of us with loved ones on the spectrum develop a finely tuned “A-dar,” as we call our ability to identify other kids on the spectrum. But I'll grant you that, especially these days, there are a lot of times when we are out in public when I suppose Billy can “pass” as “normal,” if that's how you want to look at it.
And sometimes, particularly after an exhausting day, it looks a bit like this.
And that used to be important to me. Not so much any more.
Very early on, it would embarrass me when Billy would crawl under the table of the booth at Beef O'Brady's and want to eat his grilled cheese there.
But eventually, I figured out that he likes sitting flush with the glass wall, his cheek pressed against the glass while he watches the lights of the cars in the parking lot. When I finally got down there with him and looked at it from his perspective, I thought, “You know, it is kind of beautiful.”
Also, I've had the opportunity to explain to the wait staff at the restaurant that he is autistic and why he likes to sit down there. At first, they were surprised to find out he's ASD. Then, they sort of shrugged and rolled with it. They always remember his favorite meal, give him a bright smile and never raise an eyebrow when he disappears under the table with his cheese sandwich.
Sometimes it looks like this.
There are times when I wish we had a sign. For instance, when there's a meltdown in a public place, I'd like a sign that reads, “Sensory overload in progress: Please don't touch me or talk to me.” And that would just be the sign that I wore.
In those instances, there are always a few people casting scowling glances, as though the problem is just one of discipline. Those are usually the same people that wish human beings would just spring from the womb already aged 30-ish, so that their dinners/shopping experiences/serenity are never interrupted by the sound of childish squeals.
Some people just stare. Maybe they want to help. Maybe they feel like they should do something. (FYI, if you meet me in the middle of a Billy meltdown, I'd appreciate it if you'd catch him if he runs toward you; otherwise, feel free to go about your day and ignore us completely.)
Autism looks like this less and less these days.
Thankfully, meltdowns are few and far between these days. We go out to eat as a family, take Billy to the grocery store, to Disney World, to the beach. Sure, we hit a few speed bumps along the way, but in most instances, our perspective has changed from “How can we make Billy more 'normal?'” to “How can we support him to succeed in a world that really isn't set up for autistic people?”
Is it easier for us because Billy doesn't exhibit a profound physical sign of his special need, as a child in a wheelchair or with Down's Syndrome does? I don't know. I haven't been the parent of a child with those challenges. I can only guess that there are days when, like me, they think every other parent has it easier. But even on those days, I'll bet when they look at their child, they know that they've never seen anything more beautiful.
What autism looks like is really immaterial. What's more important to me is what Billy sees when he looks at the rest of the world. Because from where I'm sitting, looking at him right now, things are looking pretty good.
Tuesday March 29 2011 05:06:55 pm
Maya
I get the "Oh, he looks so normal!" comment a lot. And now that M is becoming increasingly verbal, I get "oh, he can't be autistic, listen to him talk!" Like you, I don't really care that he can "pass," or whatever you want to call it, partially because it makes it so much more difficult for him, or us, to be taken seriously. All I want is for him to get whatever it is he needs to be able to function and grow.
face on the glass
Friday March 11 2011 02:32:33 pm
Laurie Wallin
Love the way you capture his heart and the wonder of that moment when you see the world through his eyes (or, rather, through the glass up against which your face is pressed!). It makes the crazy worth it when we "get" our kids. Love how much you do with your little man.
Hunt Club Subs and Grill
Friday March 11 2011 09:22:09 am
JDinTLH
@Ashley--Just wanted to tell you that the owners of Hunt Club Subs and Grill are our next door neighbors; a nicer, more compassionate and welcoming group of people you could not find in north TLH. We have been to Beef's in Midtown and Killearn and they have always been outstanding in terms of not freaking out when E insists on emptying the sugar packets on the table in order to sort and count them all.
Thursday March 10 2011 11:12:07 pm
Maura
Wonderful, Amanda. I'm sure you spoke for thousands of grateful parents today. Hugs to you, friend.
Thursday March 10 2011 11:12:06 pm
Maura
Wonderful, Amanda. I'm sure you spoke for thousands of grateful parents today. Hugs to you, friend.
Thursday March 10 2011 09:55:58 pm
Lynn
Our kids are constantly beautiful but I'm still glad that we are seeing less of the demeanor in the last picture and more of the first! Sounds like Billy is doing awesome! Is it me or is he your doppelganger?
Thursday March 10 2011 03:57:57 pm
Ashley
I don't know if I can say what autism looks like for sure, but I do know autism in our house wears the same adorable green PJs. We haven't been in the loop for too long, but I have noticed my A-dar is pretty darn reliable. What's weird to me is when I'm around grown-ups I've known forever and start thinking, "Man they have GOT to be on the spectrum somewhere."
I love it when we find restaurants that are patient and understanding. That definitely makes me want to add Beef's to our list of kid-friendly choices. We recently went to the Hunt Club Subs and Grill. It wasn't crowded, kids ate free (Monday), they had basketball and fooseball games for free and an electric (no heat) fireplace that kept the kids entertained. They were very welcoming. It was great!
My Awesome Son Austin
Wednesday March 09 2011 07:58:56 pm
Austin's Mom
I loved your article so much! I remember the eating under the table and the stares that we always got, and I remember wanting so much for other people to just stop judging my baby and see him for the amazing person he is. Austin doesn't hide under tables or chairs anymore and he doesn't have meltdowns like he used to, but he still gets the stares because people see him and they watch him flap or pace back and forth and talk to himself under his breath and think what is with that kid, but I see the most amazing young man, who is self sufficient and confident in who he is and who loves Him! My Austin is 14 years old now and everything you have said about Billy was so true for my Austin, and even though I know we have alot more obstacles to over come, I know and Austin knows that we will face them together. It is so comforting to know that we are not alone in our fight to try and educate society about the wonderful people our children are!
Total 27 comments