It's human nature it seems to have a need for order. Some of us more than others I suppose (we don't all immediately sort everything by color), but we all want to put things in their place to some extent. We group similar things together, categorize them and then point out how they are different. Children are taught this from the time they can reach for a toy, it's considered a developmental skill that we take pride in. We like to label things, and we're taught that everything must have a name.
We want an explanation for that which we don't understand. We want to have a tidy little box to put uncomfortable things in.
When something doesn't go they way we think it should, we want to know why, we want to know who is at fault. We need an explanation.
We want it "fixed".
But not everything fits our idea of order. And not everything "out of order" is broken.
The puzzle piece is a commonly used symbol to represent Autism. It made sense in some ways I guess, as a representation of what can seem like a complicated mystery to some. It was adopted as a symbol to represent autism at at time when it was thought that autistic people "suffered" from a condition that was very puzzling.
But now that we know more about autism and autistic people, I've been thinking lately that this symbol isn't a very accurate representation. A puzzle is flat and one dimensional. A puzzle is missing pieces, and does not represent a whole picture. A puzzle is fractured, and fragile. A puzzle piece or collection of puzzle pieces represent something that needs to be put together. They are a thing that is not whole.
There is an idea that autistic people must be cured, or fixed. That they are broken or somehow not whole. You read crazy things about how a particular diet, or oil, or therapy, can "cure" autism. People are hurt and angry because their child is "damaged", and they will search high and low to find a way to "fix" him.
I think some people think that if you can just find the missing pieces, then you will be able to put the whole picture together and it will look exactly as you thought it should. That you can make perfect what you currently see as broken.
But it doesn't work that way.
Autism isn't a disease to be cured. It isn't an affliction. It isn't something broken to be fixed. And it isn't a puzzle to be solved. Autistic people don't need to be put back together. They don't have any pieces missing. The brain of an autistic person isn't broken just because it doesn't follow the order that we think it should. It's just different. They just need to be seen and heard and understood, without our need for our order applied to them.
I think they often struggle to get along because our sense of order in the world and our beliefs about how things "should" be doesn't fit them. We sometimes say that we wonder where our son is from, because he often seems like such a foreigner in our world that it seems like maybe he isn't actually from here. The reality for him is that he is just fine, but he has been put in a world that doesn't fit him. It's like he landed on a strange planet, where the language and the customs are all alien to him, and he struggles every day to understand how to live in this foreign land.
My son is none of those things that the puzzle piece represents.
He is not a missing piece to a puzzle. He has no missing pieces. He is not flat and one-dimensional. He is not weak. He is not an imperfect picture. He is perfectly who he is.
If I were to describe him with a similar but more accurate analogy than the puzzle, I would say that life with him is more like a Rubix Cube (remember those? or am I dating myself?).
Like the cube, he is multidimensional. And, like the cube, he has very clear lines and boundaries. He is colorful and complicated.
His way of doing things might seem out of order to us sometimes, but they make perfect sense to him. His brain just doesn't work the same as ours. That doesn't mean better or worse, it just means different.
His pieces are all there, held tightly in place. Not a single one is missing.
His pieces are not ordered in a way that seems 'correct' according to what our society has decided is normal. His pieces sometimes seem jumbled or out of order by our definition.
To look at this jumble of pieces you feel like you want to sort it out, like the Rubix Cube. Trying to help him fit into this world that wasn't built for the way his brain works, can feel like a challenging mind game. You can twist and turn and make little adjustments, and never get it quite sorted to the way you think it should be. You can work it carefully and get one side beautifully lined up, but then another side is jumbled. Then you hesitate to make changes because you don't want to jumble up the side that you just got sorted. Maybe you're lucky enough to occasionally get it all sorted for a time, and everything seems great and life is going along well. But all you have to do is make one small change and the whole thing is jumbled again. Give it to someone unfamiliar with how it works, and it's a mess.
You have to be so careful of every move you make.
Life with him is never boring. I learn a technique or a new insider trick to the game every day. Sometimes showing him how life in our world works can be really fun. Sometimes it can make you feel like your brain is gong to explode. When you get something right you want to cheer for yourself. When you make a wrong turn you know you're going to be starting the whole thing over again.
A challenge? yes.
But a one-dimensional puzzle that is missing a piece?