What I Wish They Knew About Autism

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When he was 1, it was perplexing that Luc didn’t babble and couldn’t walk and stayed to himself.  But he was a baby so people thought it was fine.

When he was 4, it was confusing as to why he didn’t talk, but he was a pre-schooler and so cute, so people thought it was fine.

When he was 8, it was surprising that he spoke so loudly, didn’t like certain sounds, and fixated on trains, but he was just a kid so people raised eyebrows but let him be. 

But at 16, it’s odd that he likes to play with little kids, talks endlessly about battleships (and trains), and wears fluorescent clothes. His cadence is unusual, certain sounds bother him, and he laughs at unfunny things. He looks like a young man and sounds like a young man, but doesn’t act like a young man.  He acts like a quirky kid, and people don’t always think it’s fine.

Luc is the fourth of five boys.  We knew early on that something was different about his development.  He didn’t reach the same milestones physically or socially, and at 12 months he was flagged for autism.  Endless speech, physical and occupational therapies at Heartspring made a massive difference, and today Luc functions well in his protected world.

But I can’t always protect him. I adore my boy, and most who work with him and come in contact with him love him. He’s kind, gentle, social, and he loves to help others. He enjoys school and has plenty of kids who interact with him, and he participates in several different activities fairly independently.

Most kids seem unfazed by Luc. We are so blessed that he feels loved and included at school and in our social groups. Luc’s brothers consistently model how to handle Luc, and their friends follow suit.  My mom friends are amazing; I could cry thinking about the number of times I’ve looked for Luc and found him sitting with my friends chatting away, and Luc is as happy as can be. 

But sometimes Luc has interactions with others – people who don’t know him.  We go to dozens of games a year in a variety of sports, and Luc wanders off.  We’ve lost him before and found him sitting with the opposing team, sharing nachos. We’ve found him sitting with someone’s grandparents, telling them about the Titanic. We’ve found him playing in a park with kids we don’t know, and parents concerned about the giant kid playing tag. 

Suddenly, it’s not fine.  

What do I wish they knew?

I wish they knew Luc’s mom, dad, brothers, or grandparents are probably nearby watching, or looking for him, because we worry about how he’ll be treated, or what he might do that is misconstrued. 

I wish they knew that while quirky, to give him the benefit of the doubt and just watch and see what he does. I wish they’d recognize how happy he is, and how much kids like playing with him.

I wish they wouldn’t judge the kid with non-matching fluorescent clothes and sunglasses and instead see a kid who loves to help and play. I wish they’d watch other kids with Luc and see their big smiles as they interact with my boy. 

I wish they smiled, listened to him, made eye contact with us and waved, and decided to just be kind. 

I wish they recognized that quirky isn’t bad. He’s not damaged, just different, and Luc is so very interesting. 

I wish they knew how hard we’ve worked as a family to help Luc find success socially, physically, emotionally, and academically, and how he’s still learning – and so are we.

I wish they realized that we believe Luc is perfect for our family, a vital member of the Adler crew.  He keeps us from focusing on the endless games and school activities and instead see the fun in Nerf guns, Legos, playing with the dog, jumping on a trampoline, and floating in a pool.  He reminds us of the need for quiet, the need for space, and the need for time. 

I wish they knew that sometimes when he’s tired of people he disappears – either physically leaving or “disappearing” in his head.  I wish they knew that we trust when he needs space and let him have it, and no talking will change that.  

I wish they knew that when Luc feels left out, or believes he’s done something wrong, he’s shattered. He dwells on it for hours and will bring it up months later. He doesn’t forget hurts. I wish they knew he doesn’t forget big joys either, and gets the same feelings from those happy memories months later.

Sometimes I wish Luc was still 4, when his quirks were cute. But mostly, I wish others would let my 16 year old be who he is, in this moment, and trusted Luc and those who love him.

I wish they’d watch, smile, and follow the lead of the others near Luc. They’re probably kids, and they’ll be the ones grinning while talking and interacting with Luc; the ones enjoying their day with a young man who is quirky, but also so, so amazing. 

I just wish they knew.

 

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