It was the biggest relief of my life to finally be told my son had Autism Spectrum Disorder. That may sound strange to some, but there were so many signs that led me to know without a shadow of a doubt that he was on the spectrum. An elevated sensitivity to sound that always caused him to cover his ears, an extreme texture aversion to almost all foods, an intense obsession with trains (beyond what a typical child would experience), repetition of words or phrases, extreme sensitivity to smells, refusing to touch certain textures such as sand, grass, or dirt — those were just a few of the easy to pinpoint symptoms that led me to believe my son could fall on the spectrum.
As he’s grown older, we still struggle with a lot of these specific sensory issues but the emotional and social struggles have also magnified, which I believe is what finally led us to a definitive diagnosis of ASD.
Pierceson was diagnosed on March 30, 2018 at the age of 10 by Dr. Javier Santos-Cubiñá at Pediatric and Family Behavioral Health, PLLC.
It was a Good Friday I’ll never forget.
I’ve known in my heart that Pierceson was on the spectrum at some capacity since he was 16 months old. To go through almost 10 years knowing something to be true for your child but not be able to receive the proper diagnosis is defeating.
I first started researching diagnoses when I noticed his tendencies were different from other toddlers his age.
For instance, if you put him on the ground to sit he would maneuver himself to get up without putting his hands on the ground. Watch someone do this. It’s not easy. He would also throw his food up if the texture was too chunky. This was at an age where kids are eating anything you put in front of them.
I took to Google and had the world at my fingertips. I had to check myself every now and then to make sure I didn’t fall down a theoretical rabbit hole of information. There are many, many sensory disorders and I read about every single one of them. I felt completely overwhelmed and blindsided by it all. After talking about it with Pierceson’s father, he supported my decision to discuss this at greater length with his pediatrician if I felt that’s what needed to be done.
In the beginning though, no one really understood me when I said I thought he was on the spectrum. In their defense, he was so young and it’s really hard to diagnose that young. Especially for a kid like Pierceson who was hitting his milestones on time, if not earlier. His speech was on target, he started walking on his first birthday and he was potty trained by 18 months, so we were just humming along at this toddler thing.
I felt like maybe I was making something out of nothing. Am I overreacting? Will he just grow out of these tendencies? Is this normal behavior and I just don’t know because I’m a first time mom?
At 18 months, his pediatrician did a routine screening for ASD. Pierceson didn’t fall on the spectrum.
I felt defeated. A voice inside of me told me that this really can’t be right. As a new mom, I trusted our doctor and decided to give it some time.
He was screened again at 24 months. Again, he didn’t fall on the spectrum. But his tendencies stayed the same.
By the time Pierceson was four, he was attending a Montessori school, and I had probably read 10 books about ASD. We had a close relationship with his teachers and administration and I brought my concerns up with them. They immediately understood where I was coming from and I felt like this was a step in the right direction. I’m not crazy, someone else sees it!
So we decided to get Pierceson tested privately for ASD through Southeast Psych in Charlotte. We went through a very rigid series of tests that included IQ tests, hearing and vision screenings, developmental assessments, and an ADOS, to name a few.
I just knew this was going to be it. These series of tests were so thorough that we’d finally get some answers. We did not. He was just barely outside of what would be considered “High Functioning” (I loathe that term, by the way). Again, defeat.
Years passed and I struggled internally. That very label he didn’t get is what opens so many doors for resources my son so desperately deserved. But more than anything, I wanted him to have the opportunity to be his own advocate for autism so he could spread awareness, understanding and acceptance. I wanted him to have answers for himself, too. I felt trapped.
While a few things he struggled with at a younger age seemed to get a little better, other things started to present themselves more. Social situations became increasingly harder for Pierceson – eye contact, engaging in give and take conversation, a disconnect from empathy in some situations, or picking up on social cues/facial expressions from other kids.
When Pierceson was in fourth grade, I sat with him and his teachers, talking about his strengths, but also his difficulty focusing. He looked up at me with tears in his eyes and said, “Mom, I know what I’m supposed to do, but I can’t get my brain to listen.”
I felt like someone drop-kicked me in the stomach. He was finally able to vocalize what it’s like to be in his brain. Every pencil tap, every whisper, every door closing – he hears it at a magnified sound, and of course it makes it hard to focus. His brain works overtime and he just didn’t have the tools to understand or know how to silence it to focus.
This was all I needed to catapult me into a feverish quest to get the answers we needed. I had the support of his father and stepmother as well as my husband at this point. We were all four going in the same direction, for the same goal.
We were going to find answers and we were going to get him the help he needed.
When we had our first meeting with Dr. Santos-Cubiñá, we were there to see him about an ADHD diagnosis we had received. He dismissed Pierceson from the room. With myself, my husband, Pierceson’s father and his stepmother all in the room, Dr. Santos-Cubiñá looked us in the eyes and said the words I’ve been waiting to hear for 10 years.
Your son doesn’t have ADHD, he has autism.
I felt a range of emotions but the ones that stuck with me were validation and relief. Dr. Santos-Cubiñá pulled out the DSM V (Diagnostic and Statistical Manual of Mental Disorders) and began to read the different symptoms associated with ASD. With tears in all of our eyes, we just began shaking our heads. Every single symptom lined up perfectly with Pierceson. I remember this moment fondly because it was the first moment where I didn’t feel alone in this journey.
I spent the better half of the next week face down on my cold bathroom floor sobbing uncontrollably. The next week was a roller coaster for me.
Intense sadness, relief, anger, confusion, validation, pity – you name it, I felt it.
Then I pulled myself off of the bathroom floor and slowly began to discuss it little by little, including the conversation we’d have with Pierceson about autism.
The time to tell Pierceson about his diagnosis came faster than we anticipated when my husband and I were asked by a girl about a matching bracelet we were all wearing. Lokai bracelets support different organizations and she asked about ours. When I told her they were for Autism Speaks, Pierceson interjected with, “What’s autism?”
There it was. It was time to tell him. We got in the car and started discussing it with him immediately. We explained that Autism causes his brain to view the world differently. It also does a lot of cool things like make him super creative, have an intense love for Star Wars, or make him special and unique. We also explained that autism is why he doesn’t like to deviate from a rigid schedule, or why he blinks a certain way, or why he doesn’t like loud noises. I made sure to overemphasize the unique and special component and that’s what he really hung onto.
We parked the car at home and started to get out. He saw my dad (who lives a couple of doors down from us) and he took a full sprint down to his house with his arms flailing, saying, “Paw Paw! Paw Paw! I have great news! I HAVE AUTISM AND IT MEANS MY BRAIN WORKS DIFFERENTLY BUT IT MAKES ME SPECIAL AND UNIQUE!”
Today, Pierceson sees his autism not as a label or disability but rather as an explanation to how he does certain things or how he sees the world.
And today, I see Pierceson as a future advocate for autism, and as a voice for those who may not have one. I see him encouraging acceptance of ASD because the more people know about it, the more they can understand.
While doing our research together and watching videos about ASD, we came across the Autism Speaks Walk in Charlotte on Sept. 22. Immediately, Pierceson decided he wanted to participate and put a team together. That’s how team “Powered by Pierceson” was born, and the outpouring of love and support has been so humbling. This walk will be the first time he will be knowingly surrounded by those who are also on the spectrum.
As we move forward, we definitely have our good days and our bad, so that’s not to say we don’t struggle because of ASD. But he will never use it as a crutch. He may just arrive at his destination in a different way from others, and that’s OK.
His brain works differently. And it’s beautiful.