Solving the Autism Puzzle Piece

My own autistic son showed me the meaning of the famous autism puzzle icon.

Posted Jan 31, 2020

When my autistic son, Nat, was a baby, he would not play with toys. He put everything in his mouth or lined them up. He preferred the boxes things came in. I could not understand why he was so different from any child I'd ever encountered, and I despaired for him. This was 1989, before there were autism early detection checklists, before the Internet, before the term Autism Spectrum. Before the 1 in 59 diagnosis, before the blue autism puzzle piece.

Back then I longed for the world around me to understand autism, to help Nat, to help me. I wanted autism to be on the map, like AIDS and breast cancer. But that did not happen for a few more years, when Autism Speaks came on the scene with its blue brand and its controversial message of curing.

I won't lie. I wanted Nat to be cured, not because of Nat, but because of how much he had to struggle. The puzzle piece symbol seemed pretty fair to me because Nat was a puzzle. I did not know much about connecting with him. The only tool I had was education, but really the only game in town for autism was the strictly behavioral approach, one of reward systems for making small gains, step-by-step. When Nat was five we discovered an ABA (Applied Behavioral Analysis) school, and they sent a therapist to our house to teach Nat play skills and to train me in how to teach Nat various other skills. We would watch this therapist take the little Fisher-Price dolls that Nat only liked to line up, and she'd put the green boy in his red plastic car, saying, "Put boy in car. Car goes vroom." Nat would get an M&M for doing this "correctly."

The M&M evidence of success mounted, proving that Nat was doing well—at pretending to play. It was just not natural to him; he knew how to play but he didn't know why to play. There was no joy in it for him, not like when he could stare proudly at his perfectly aligned guys, a wide smile split around his left thumb in his mouth.

So Nat's progress was not genuine because it was not really his own. It felt like a lie. It was precariously balanced on other people's standards. The world suddenly felt all backward and crazy—yet the world considered Nat the puzzle to be solved with this artificially structured play.

Still, I listened to the educators because I had nothing else. I was terrified for playless Nat. What would become of someone who couldn't even play? Who could not answer a yes or no question? Year after year, I would sit with him and insist he play.

It wasn't until he was around 7 that my nausea and anxiety about Nat subsided a little because there was one toy that he gravitated towards: a puzzle spelling game. He really enjoyed the satisfying sliding-into-place of the pieces and then seeing a labeled drawing of each animal form. It was this gratifying game that taught Nat how to play—and how to read. The day he pointed to a whale picture on a wall and cried out "W-H-A-L-E spells whale," I could not believe my ears. But it was true. Nat knew how to read, because of Spell-A-Puzzle.

As Nat became a teen and then a man he discovered a new form of play: sports. Whatever Special Olympics offered, Nat would sign up. Sports are the norm for young men, so it seemed like we could all sigh with relief at last.

But sometimes I would still hear what those early childhood educators would think of Nat when he was off the court. Because he still has few leisure skills. He didn't like video games, use an iPad, or read anymore. I would feel sad and guilty about how he would just sit in the center of our couch, staring into space for long hours. At Chanukah this year, I was determined to find something for Nat that was not chocolate (he still doesn't like to play, but he sure likes his M&Ms). I was in a local bookstore and found a puzzle that assembled into a map of the Boston MBTA transportation system. Like so many autistic people, Nat loves trains. I wondered if somehow he could rediscover the fun of snapping together a puzzle, especially if it had the familiar symbols of the subway.

Nat tried it. I stretched out on the floor with him, both of us studying a game together, and I tried not to get too excited. But we were playing together!

But, as always, before long, I felt his attention begin to flag as the puzzle refused to take shape quickly enough for him.

Oh Nat, please, stick with it, I thought. But at the same time, I knew why he'd withdrawn: it wasn't that he didn't like playing; maybe it was just too hard. Maybe it made him feel like he wasn't good at it, unlike sports, where he could shine. It wasn't about M&Ms; it never was. He's not stupid, after all; he knows what real victory feels like. Reading and Special Olympics had shown him that.

Maybe he needed a boost, that was all. I started—well, cheating a little—by sliding likely pieces over to him. I'd say in an off-handed way, "I don't know, what about this piece?" and he would take it and fit it into its space. And as we worked together, he even started grabbing my pieces and fitting them in place for me. Nat wanted to do the puzzle, so badly that he was actually being rude! But it delighted me because this meant it mattered to him.

That Saturday morning, something beautiful clicked into place, and not because Nat had suddenly turned "normal."  It was just Nat and me playing together, equally determined to beat those puzzle pieces. The puzzle was in front of him, not within him. No M&Ms needed.