Understanding the Puzzling Pieces of Autism

By Holly Sleppy

Many people wonder why the puzzle piece represents autism awareness.

Is it because it’s a puzzling diagnosis? Yes, that’s one reason.

But to someone who’s been through it, I know it’s because, like a puzzle, an autism diagnosis is made up of many different pieces. And these pieces are different for each individual with autism. Each piece must be studied and evaluated to make sure it fits into the big picture. Because of this, it can take a long time to get to an actual autism diagnosis.

I’ve been writing blogs about this long process for parents who have the slightest inkling that there’s something “not right” with their child. It may not be autism. But, it could be something, and my main message is this: you need to trust your instincts and follow through until you’re satisfied that it’s nothing or until you find out that it is something and learn what you can do. 

The Beauty of a Brass Doorknob describes my son’s unique curiosities when he was 2. Early Intervention is Crucial in Diagnosing Autism talks about the daycare providers who were concerned about his “angry behaviors” and the piece of advice that helped us start to understand those behaviors. In How a Hot Dog Helped Make Sense of Sensory Processing Disorder, I share how “hot dogs, ketchup, mustard and relish” helped us make sense of a baffling “sensory” disorder and bring our son a sense of calm that he never really had.

It took me three, super-condensed articles to summarize what occurred over the course of three years of our lives. And this is what it comes to. 

My son Evan was finally diagnosed with autism at age 5.

In preparation for kindergarten, he was observed, tested and evaluated by educational experts from both our school district and the Bucks County Intermediate Unit. Behavior, play, intelligence, reading…no skill or talent was missed. My husband and I completed questionnaires; his teachers did the same.

The end result of all this information was delivered over the phone as I sat at my desk at work.

The school psychologist said: “We completed Evan’s evaluations and given all the input, it’s clear that your son has Asperger’s syndrome, or high-functioning autism.”

Silence. Shock. Confusion. Tears.

Had I just heard the word “autism” in reference to my son?

My chatterbox, super-sweet, super-bright, highly affectionate, sensitive son?

I had seen Dustin Hoffman’s portrayal of an autistic savant in the movie “Rainman.” I even had a friend whose son had autism. He used no words. He held your hands as he yanked his body from side to side. He only ate hot dogs and Cheerios. He watched the same show over and over with his face one inch from the TV. Evan DID NOT do these types of things. How could HE have autism?

When the actual written report arrived, it did not help the state of shock and disbelief I was in.

On the bright side, it said Evan was a “precocious” reader—a preschooler reading at the level of a child at the end of first grade. He was exceptionally bright in recognizing words and remembering facts.

But there, in black and white, was the dark side. The report said that my son couldn’t figure out how to play with other kids. He had high anxiety and demonstrated sadness and frustration in many situations in the classroom and on the playground. It even said kids with high-functioning autism were at risk for depression and suicide as adolescents and teens. Suicide?

At no time in the few years leading up to this, had I EVER  guessed that my son would be diagnosed with autism. It wasn’t the furthest thing from my mind because it wasn’t in my mind AT ALL.

Finally, my son’s autism puzzle was coming together.

And I was falling apart. 

Updated April 5, 2017