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Autism Is Not a 'Missing' Puzzle Piece in My Child

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Our middle son was our first child to be diagnosed with autism. He was 4 at the time (2011), but we knew long before that. At the time, there was little information on the internet that we found to be helpful. It mostly described one type of child, a “stereotype.” Information was often written in technical terms with no solid, concrete or easy to understand examples. Language was often bleak or negative. Our child did not fit the neurotypical box, but he didn’t fit the autism box they painted, either.

Once he was diagnosed, we continued to look for information. One image popped up everywhere: the puzzle piece.

Everywhere there was this puzzle with a missing puzzle piece: “Until all the pieces fit.”

Everywhere we looked we were shown this visual that translated to our child having this essential missing piece.  As if he was broken or wasn’t whole. It communicated he was in need of fixing and the missing puzzle piece was some mystical cure-all that would be the piece that fits. The piece that would make him “normal” (like neurotypicals). The piece that would make it all “better.”

This is what the images and websites tried to tell us. We weren’t really buying it, but it’s all we saw in the doctor’s offices, in the specialist’s offices, on the internet.

But our son didn’t even fit the rest of the puzzle. He wasn’t this version of an autistic boy we searched for on the internet. Perhaps some people thought there was something wrong with us because we didn’t want to fix him, we wanted to understand him. Learn how to make his life easier. Know how to explain him to others so they were accepting of his differences. We didn’t fit anywhere.

Soon we realized that autism is a spectrum disorder for a reason. There is no box — even in the world of autism.

Yes, there might be some autistics who resemble the stereotype. There are autistics who don’t make eye contact at all, and some who are great at it. There are some who have no verbal language, and some who never stop talking. There is no box. The only box that exists is the one people try to shove autistic people into — the one they don’t belong in at all.

No one belongs inside of box.

Which brings me back to the puzzle piece. It irks me. It makes me furious, really. It’s this horrible image of broken people trying to be shoved into a box (or puzzle) they have no business being in at all. This “necessary” piece to be whole is floating out there in oblivion, somewhere, never to be found or obtained. This mysterious piece that is missing, that keeps autistic people as the quintessential “other.”

For us, autism is not a “missing piece,” it was the piece that finally fit. It’s the piece that put it all together for us — it makes our children (and now we know, myself and my husband) whole.

Until the piece fits?


The piece that finally fits!

The piece that explains my middle son’s obsession with letters, numbers, shapes and colors. It’s why he stims, its why he covers his ears when he’s overstimulated. It’s why my husband shuts down in a job interview and hates loud noises. It’s why I can smell pizza or a dirty diaper across town, and we all meltdown from the pressure of holidays. It’s why my oldest sometimes talks like a professor and my littlest one can’t say a word in a new situation. It’s why we are understanding of screaming kids in a store, and work to educate others on the spectrum of autism.

It’s why we are so close as a family, and how we love each other.

So, we choose to take back the puzzle and the “missing” piece that’s no longer missing. We are choosing to reclaim it as our own, unique puzzle where all the pieces fit. It doesn’t mean that it’s easy or perfect. Far from it. But we aren’t these broken shells of potential people either.

We challenge your family to create your puzzle — your complete story, where all your pieces fit.

We want to hear your story. Become a Mighty contributor here.

Originally published: March 6, 2018
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