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The Puzzle of the Autism Puzzle Piece

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I have a feeling this post may be controversial. That’s not my intention. Not at all.

I have a confession. I have not one, but two puzzle piece themed tattoos, that yes, relate to autism.

One is my daughter’s name, along with three puzzle pieces and two starbursts. The other says, “Love you to pieces” in a swirly script, with three small puzzle pieces entwined.

I’ve come to realize more and more, how profoundly a lot of autistic individuals find these puzzle pieces a negative symbol; something they don’t want symbolizing autism, symbolizing them.

If I have the reasons right — and please correct me if I don’t, I’m still learning — they feel it is associated with an organization that has a tainted history in the autism world. They feel it symbolizes autistic individuals as less than, missing pieces, not a complete puzzle or neurotypical person. I can understand these reasons. I can empathize with them. So, I share this article not to refute or negate those feelings, those reasons, but to explain my own.

I’ve always loved jigsaws. Always. As a child I would sit for hours and hours, sorting the pieces before I began; categorizing them into border or middle, sky or flower, building or boat. I would methodically try each piece until I found the right one. Of course, there were also a few meltdowns if pieces ever went missing.

I like the way jigsaw pieces look and feel — the good ones anyway. Uniform curves and hollows and straights. The way they smell, how they are so, so, smooth on the surface, yet matte and even slightly fuzzy underneath. I like the way the sound when they tumble out of the bag into the hard shell of the box, cascading off each other and gently settling into a sea. I even like when you find the odd pair still not quite separated, and how you have to gently, carefully, ease them apart to keep each piece intact. I like the way sorting them into neat little piles makes me feel.

I remember when my daughter was still a baby, finding a rug that was interlocking puzzle pieces, in pinks and purples and cream, and just having to have it for her room.

So yes, I already loved jigsaws.

When we realized Mia was autistic, we entered a whole new world. At first it was puzzling and confusing, and the jigsaw pieces made sense to me. Not that I ever viewed my beloved daughter as an incomplete person. Never. No, rather that autism itself was a puzzle to me at first. A puzzle I very much needed to complete, to understand, to connect. My daughter was on many days in the early years an enigma to me. I would spend my time figuring out what she was communicating to me, why she behaved in certain ways, how I could help her. She was — she is, one of the smartest, most inquisitive, curious, honest, funny, brave people I have ever had the privilege to know. But it took a little time for me to work out how to be the best mother I could to her, one piece at a time.

And so, I found the puzzle pieces a good symbol. I went and got my first tattoo of her name, with the puzzle pieces and starbursts in pink and red and purple. And it often starts a conversation, a conversation with strangers that I may not otherwise have had.

Not too long later I got the second, on the other side of the same wrist. A local tattooist was kind enough to dedicate a day of her time providing autism themed tattoos she had designed for a reduced rate, donating all her profits to my daughter’s ASD unit.

I picked the one that said, “love you to pieces.” I liked the way the script swirled, the way the delicate puzzle pieces were like leaves in the vines that held it all together. Most of all I loved that it was a phrase my father had said to me many, many, times, and a phrase I knew I wholeheartedly felt towards my daughter. I liked the play on words, and the way it fit with my existing tattoo.

Meanwhile, we had become immersed in the local and online autism community. It was this community where I fit as much as Mia did. It was a piece that had been missing from my life for so, so long, it gave me friendship, and support, and a place to truly belong.

I had been given so many diagnoses in my life, half pieces, or wrong pieces, that just didn’t sit right. They looked right, like that one piece of sea or sky — almost the right shade of blue, but there was something off, a slight difference in color, a tiny ridge in the picture, having to push a little too hard to place them….

They itched at me, these pieces. I hate half pieces and wrong pieces, and the horror of pieces that made their way in from another box entirely!

When I first realized I might be autistic, I was finally handed the right pieces to begin fixing my disjointed, incomplete picture. Not having pieces of myself taken away, reducing me from the neurotypical I had believed I was; but brilliant, vivid pieces, that built me up into who I am, was, will be…  finally and completely.

The pieces fit.

And so, I still love my puzzle pieces, my tattoos, that are the most personal and permanent form of self-expression. I understand why some people won’t, and I’m sad, dismayed even, at the thought that they might be adding to the wrong narrative. It wasn’t my intention, and I even might have refrained from getting them if I knew then what I know now. But I can’t be sad they are there, symbols of my love for my daughter, of finally understanding myself, of a community where I now fit, and of all I have left to learn.

Follow this journey at autismtintedglasses.

Getty image by Thomas Northcut

Originally published: April 10, 2018
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