Stephanie Allen Crist

I first discovered the blogosphere at a time in my life where I was actively searching for information about my children’s developmental delays. Interacting with others via blogs, through posts and comments, led me to the neurodiversity movement, which led to my first book, Discovering Autism / Discovering Neurodiversity.

In the greater autism community, the puzzle piece as a symbol for autism is a topic of heated discussion. To some, the puzzle piece conveys the confusing mystery of treating, caring for, and interacting with a child with autism. To others, the puzzle piece implies that autistic people have a missing piece that makes them less than human.

For me, the puzzle piece never made sense. It signifies a two-dimensional image broken into a known set of pieces. If you get a box of puzzle pieces, you expect the box to contain all the pieces of a single puzzle. While there are exceptions for those who crave the challenge, generally speaking a box that does not contain all the pieces to a single puzzle gets thrown away. At least in my house. My autistic children have little tolerance for puzzles they cannot complete. They don’t know how to regulate their feelings of frustration and disappointment when they encounter a puzzle with a missing piece.

Autism is nothing like a puzzle. We do not have all the pieces. I suspect we’ve missed more pieces of the “autism puzzle” than we’ve collected.

Here’s the thing. Autism isn’t real. Autism is a word that describes a set of behaviors. Autism is diagnosed by professionals evaluating certain behaviors against specific standards. We do this, because we cannot test for autism. We can’t test for autism, because we don’t know what autism is. In all likelihood, that which we call “autism” has multiple causes. In time, these causes will be treated like the separate conditions they are. But, before that can happen, we have to figure out what is going wrong on an individual basis, which is part of the reason why people come up with such radically different treatments which work with some sub-sets of the autistic population. We don’t know why they work for those they work for and yet don’t work for others who seem very similar.

Autism is a complex topic. Even as a topic, it has far too many layers to be represented by a puzzle piece. It’s such an oversimplification that I find the symbol mildly offensive.

But that’s not why I’m writing about this.

I have been gathering pieces to put together my wellness puzzle for years. I’ve compared the journey to a glass house shattering down on top of me. I’ve compared the journey to the metamorphosis from caterpillar to butterfly. The thought of comparing it to a puzzle is a bit of gut punch for me.

I’ve been sick for so long, in one way or another, that I do not remember what feeling well feels like. I can tap into those memories when I am in a meditative state, especially during a particularly effective guided pain relief meditation. But I cannot remember what it feels like to feel good in my body while my mind is anchored to my body.

I have accumulated a lot of diagnoses over the years. Doctors can tell me the effects of the malfunctions in my body and they can even alleviate some of them. But all of my diagnoses are like autism. They’re not real. They diagnose the malfunctioning behavior of my body. They do not identify WHY my body is malfunctioning in that manner.

Up until this point, I have been trying to identify the whys. What, precisely, is malfunctioning and how do I fix it?

I was told in a vision that I do not need to know what is hurt to heal. Healing the whole self heals the whole self. Her words were prettier and more profound.

And yet…I was still really hoping that the doctors would be able to give me something to work with. A clue, at least.