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Hello, My Name Is Autism

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I recently had the honor of being published on The Mighty. The site shared this post that I wrote about my son for World Autism Day. The post was meant to document his journey as well as raise awareness for autism and Asperger’s syndrome. I’ve had wonderful responses to it and, because of the post, have connected with fantastic moms of kids around the country whose snowflakes are similar to mine. I’m so grateful for the opportunity to share our story.

There was just one thing.

When The Mighty shared our post, they gave it another title. On The Mighty, the post appears as “Most People Don’t Realize My Son Has Autism. I Want to Change That.

My first reaction to the new title was not a positive one. It brought to mind a giant sticker on my child’s forehead: “Hi! I may seem normal, but really I have AUTISM.” I didn’t even want to share the link to my published post. I was worried about judgment based on that title. But then the brilliance of it began to sink in…

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If you follow any autism organizations or blogs, you’re probably aware of a divide within the community. There’s a seemingly increasing gap between those who want to focus research and awareness around finding a “cure” for autism and other spectrum disorders and those who are more focused on understanding and accepting people with the condition. I’ve a hard time falling into either camp.

On one hand, if I could wave a magic wand and make my son’s anxiety disappear, I would. I’d love to know that I could send him to a science class without worrying that something will send him into a panic. I’d love if he could sleep at night without anxieties and nightmares. I know my husband would love to wave that same magic wand and make our son understand sarcasm (though I tend to find the literal interpretations amusing!). I might, however, wave away the difficulty my son has interpreting body language and other nonverbal cues. I might also zap away his sensory sensitivities or his difficulty focusing. It would certainly make life easier.

On the other hand, though, the longer I spend trying to trace my son’s unique thought processes and the more I strive to understand the way his mind works, the more amazed and enthralled I become and the more I realize that tied to so many of his challenges are his incredible strengths.

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He’s incredibly literal-minded and finds a lot of humor and nonverbal social cues difficult to decode. He probably won’t notice if you don’t really want to hear about all the different species of snakes he’s held. But what he does understand about emotions, he understands with all his being. If you’re crying, he will sit with you and hug you until you stop, probably shedding some tears himself. He protects his friends and his family from physical and emotional pain with a blinding intensity. He would, literally, give you his last cookie to make you smile.

He could not go into a public restroom for years because the sounds were too overwhelming, and he still refuses to use a hand dryer because of the noise. He can also, however, use that heightened sense of sound to recognize an impressive array of voice actors and common chords or melodies in seemingly unrelated pieces of music.

He sometimes has social difficulties due to his fixation on certain topics: animals, a TV show, dinosaurs, etc., but his knowledge on said topics would put most adults to shame, and the joy he finds in sharing new facts with the people he loves is beautiful to behold.

He has issues with attention and focus. It takes frequent reminders to keep him on task with schoolwork or chores, but when he picks up a book on extinct species, you will never pry him away. It’s almost as if his brain refuses to use its powers of focus and attention on common tasks; they must be reserved and stored for maximum strength to unleash on only the most important of subjects.

He sometimes has a difficult time relating to peers. The moodiness and “cool kid” act that seems pervasive in our culture right now is completely lost on him, but he will find a special toy to hand to the visiting toddler at our house, coo to a friend’s new baby or read to his preschool-aged brother with infinite patience.

He does have challenges I’d love to wave away or “cure,” but the way I see it, they’re almost all irrevocably tied to some pretty amazing strengths, and never would I want to wave away those. Those strengths, those quirks and even those challenges are all part of the complex fabric that is my beautiful son.

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So… do I want to label my son for all to see? Do I want everyone who meets him to say “Oh! He’s autistic!” Of course not. I take pride in the fact that he can and does blend well into most “mainstream” environments… but here’s what I would like to see change. When we talk about autism, I want us to talk about the strengths and not just the challenges. I want us to talk about the good and not just the bad.

My son recently accompanied to a series of classes on parent leadership. While the adults met, a supervising teacher and a group of teenage volunteers watched the kids in the next room. The volunteers loved my son. The first week, he drew flags for them from countries around the world and then a self-portrait in which he correctly labeled almost all of his anatomy. They raved to me that he was “the smartest kid ever” and begged me to tell them all about homeschooling, convinced that was why my son was so intelligent. Never once did it occur to them that he might have Asperger’s.

On the last night we attended, my son had a rough night. His brother had been tired and grumpy, and as I’ve mentioned, my son is fiercely protective. Somehow, he became convinced that one of the volunteers was trying to take away his brother’s special stuffie cow “Moo Moo.” I heard the screaming from the next room, and the teacher and volunteers begging him to calm down. When I bolted next door, I found him pressing himself between two bookshelves, holding his arms around his head, drenched in sweat and crying. As we left, the same volunteers who’d been praising him for weeks asked me “Is he OK? Wow…. That was…. Wow.” Now, they saw the autism.

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I don’t wear rose-colored glasses. I know autism can be angry and ugly and anxious and heart-wrenching and painful. I know I’m lucky that we’re at a point where most days those meltdowns are only simmering on the back-burner. I know that even in this “good place,” my son still struggles much more than a neuro-typical child. But I also know there’s beauty and strength and insight in my son that’s unique and special to him and his journey.

I don’t want everyone to see the label when they look at my child… but I’d like them to see it not just when he shows them the challenges. I’d like them to see it in the strengths as well.

This post originally appeared on Finders Seekers.

Originally published: April 7, 2015
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