Understanding the Puzzling Pieces of Autism - Virtua Blog

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

navigator access center

Contact Virtua

A Personal Health Navigator can help you find a doctor, schedule appointments or classes, and help you find a service or location.

888-VIRTUA-3 Live Chat

You may also like

What Every Parent Needs to Know About Developmental Delays

What Every Parent Needs to Know About Developmental Delays

Kids with developmental delays may show obvious signs, or they could be subtle. Learn what to look for so you can help your child with early intervention services.

Read More

Mask Up: How to Talk to Your Children About COVID-19 Safety

Wearing a mask and social distancing have become the keys to preventing the spread of the coronavirus. A Virtua Health pediatrician explains how to help your child follow the rules.

Read More
Virtua's Pediatric Early Intervention Program

Meeting the Developmental Needs of Children

A closer look into Virtua's Pediatric Early Intervention Program, which provides services to children birth to three years old with developmental delays.

Watch Video
Is Your Child Just a Picky Eater – or Could It Be Something More? - Virtua Article

Is Your Child Just a Picky Eater – or Could It Be Something More?

Many young children are picky eaters. But, some have food sensory issues that go beyond typical pickiness that can affect long-term nutrition and health.

Read More
details of diagnosing autism

Early Intervention is Crucial in Diagnosing Autism

An interview about early intervention and strong parental instincts were the triggers that helped get our son on the path to an autism diagnosis.

Read More
the beauty of a brass door knob

The Beauty of a Brass Doorknob

The early signs of autism can be so subtle that you dismiss them as nothing to worry about or, like us, you see them as brilliance.

Read More
Showing 6 of 14