Why We Are Not Puzzle Pieces – Renata Jurkevythz

So, let’s talk about the dreaded puzzle piece. The community of autistic adults is hurt by it because we perceive it as offensive. On the other hand, non-autistics who have autistic people in their lives, be it a family member, friend, colleague or client, consider it not harmful because it just represents their wish to “figure autistics out”. My goal here is to address both sides and explain why in the end it does hurt people on the spectrum and why, in my humble opinion, it doesn’t actually make sense.

Starting from the beginning: non-autistics live in a world that follows a particular line of thinking, perceptions, sensory needs and social behavior. Alternatively, we have these different kids (who WILL later become adults, but people seem to forget this basic life rule) who perceive, feel and interpret the world in a completely different way and therefore have big problems to fit, communicate and be an active part of it. They represent a mystery, a conundrum, a… puzzle that is missing a piece! And finding this piece is key to understanding them and for them to be happy. It makes perfect sense, right? So why do people get offended by that if non-autistics are just doing their best to understand them? Well, it’s not that simple. Let me explain.

First of all, we need to stop and simply analyze what a puzzle that is missing a piece represents. A puzzle is a set of many pieces that when combined form a beautiful image. When a puzzle is missing a piece, it is incomplete. It will not form a perfect final picture. So, whether you like it or not, you are sending this person the message that they are not complete, that they are missing something. Apparently that something is very important because everybody is doing their best to find it! With that understood, I’d like to say this is just the more superficial layer of the problem.

Exploring further we have two huge problems that create a big barrier in this discussion, making it difficult for non-autistics to acknowledge the claims of our community. Both these things are so internalized that people don’t even realize they exist, or that they are in fact a problem:

  1. The idea of “standards” and how they must be followed.

Living in a world that is designed to their needs and way of thinking, makes it hard for non-autistic people to understand and accept the idea that difference exists and it doesn’t mean broken. This idea of making a pasteurized reality in society brings a sense of safety. People know what to do, how to think and what to expect as a result of their common actions. Then, when somebody behaves in a totally different way it is confusing and threatens the perceived peace brought by their standards. Suddenly, they need to start from scratch, analyze everything and feel confused most of the time. Non-autistics are not used to that so it can be frightening and frustrating. But what they don’t know is that these feelings are at the core of our lives. Being the stranger in the world means always having to give our best to try to understand each and every part of it, all the time. What I can say from my personal experience is that this world and all the people in it to me feels like I am encountering 50,000 different puzzle pieces! And not only that, they feel almost like monochromatic puzzles… The ones you absolutely can’t tell one piece from the other and are maddening. This world is missing A LOT of pieces. It’s not just one. I feel like I have spent the 36 years of my life giving my best to assemble this puzzle but I didn’t even get to 30% of it completed. I have mostly given up getting the final picture because it’s really not going to happen for me. So, when you tell somebody that it has felt like this their whole life, that they are “a puzzle piece” it really comes off as a bad joke. It’s like complaining about your seasonal flu to somebody who has pneumonia (I don’t like sickness metaphors but they seem to be what people understand the most, so there you have it).

  1. The need to understand something to grant value to it.

Again, living in a perfectly stylized world makes people see value only in what they comprehend. This is a direct consequence of the first topic above. As hard as it might be to accept that, it is indeed possible to cherish something you simply don’t understand. When I said I gave up trying to figure out the world’s puzzle, for example, that’s what I meant. I don’t need to understand it perfectly to live here and just try my best to connect to other people. That’s what the autistic community expects from non-autistics as well – to be able to value and cherish what you don’t understand without the need to figure them out. We can all learn from each other if we just understand the fact that we are different and respect that difference. Without explanations, symbols or anything that highlights the fact that we are not the same.

I was just a mother with an autistic kid once, before I found out I was autistic myself. Even though I could never understand the puzzle piece idea (I didn’t know I was autistic yet but had always found other people puzzling) I understood where non-autistic mothers (and other family members) are coming from. You want to understand the children you love. But I ask you to stop and make these reflections: How do they feel about you? Aren’t they just AS puzzled by your differences as you are about theirs? Or perhaps maybe they are even more puzzled because they don’t have the luxury of living in a world that understands them? Do you really need to understand what goes on in their heads to admire and cherish them?

Let’s not call anybody anything other than human beings. Sons, daughters, sisters, brothers, mothers, fathers, friends… because we are just that. We are not mysteries, things to be figured out. We are not puzzle pieces.

About Renata Jurkevythz

I’m a 36 years old recently diagnosed Aspie. Married to a neurotypical for 15 years. Mother of three – a 10 year old Aspie girl, 4 year old classic autistic boy and a little baby boy. I found out about my neurology last year after my son was diagnosed and I started to dig deep into autism. Then my daughter’s diagnosis followed. We are a unique, happy bunch and try to make the best of what we have. We see different brains as just different, all with positives and negatives – there isn’t a wrong one! We are from Brazil but recently moved to Germany. My special interests are writing, learning languages, games and movies. I also love forests – they bring me peace. Things that make me instantly happy are the sound of singing birds (specially Seagulls) and children laughing.

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