‘What am I doing wrong?’ Our typically fun little boy seemed like a shell of himself. He didn’t like being touched or hugged. I blamed myself.’: Mom shares son’s autism diagnosis journey

More Stories like:

“I always knew my son, Owen, was a little different, but it wasn’t until last year, early 2020, we started getting answers as to why he wasn’t developing like a ‘normal’ preschooler.

March 7, 2017, was the day I became a mother for the first time. I had been in labor for 30+ hours, delivering a beautiful baby boy weighing just short of 9 pounds. He was perfect in every way until he wasn’t. Right from the start, Owen wasn’t great at nursing. He was always dropping too low on the weight charts at every pediatrician appointment. We had to go to the doctor constantly for weight checks, and each time, I left defeated. I blamed myself, I didn’t feel like I was doing a good job as his mom. I mean I was a stay-at-home mom, it was my job to make sure my baby was perfect, right? What was I doing wrong? Why am I not good enough? These questions raced through my mind for the first year of Owen’s life.

Courtesy of Morgan Coulter

Around his first birthday, I started noticing some things weren’t matching up to what he was supposed to be doing, according to the developmental milestone charts I saw in every book and blog post I came across. He was still underweight, he didn’t like being touched or hugged, and he didn’t do fun toddler things like clap, wave, and point at things he was interested in. I brought this up to his pediatrician and he told me not to worry, that I needed to get off of Google.

Courtesy of Morgan Coulter

Once he got into his toddler years, we had even more concerns. He would fixate on things that seemed odd to us. The way a hairbrush felt, tags on his clothes, the sound the dog’s collar made when he scratched it a certain way, over and over and over. He didn’t have any interest in playing with other kids. He would much rather sit alone and line up his trains and cars. If he asked me or my husband if we wanted to play with him, it was merely an invitation to sit and watch him. If we were to move something or try to change anything, we were met with frustration, crying, and screaming.

We mentioned this again to the doctor around Owen’s second birthday and he told us again this wasn’t a cause for concern. I asked a couple of times if he was showing any signs of Autism and he said, ‘He’s not autistic, his speech is too good.’ He was absolutely right, Owen’s speech was great, and who was I to question a doctor?

Courtesy of Morgan Coulter

Then my husband got a new job as a pediatric emergency department RN and we had to change insurance plans. We found a pediatrician we loved and trusted and she actually listened to our concerns. We told her everything we could to help her understand our sweet boy. Owen hated being anywhere there were a lot of people. Bright lights and loud/abrupt sounds would send him into screaming meltdowns. He would cover his ears and it’s like his whole personality shut down.

Courtesy of Morgan Coulter

We took a drive out to a local sheep farm and craft market one Sunday afternoon and it wasn’t the fun family day we had planned. Although he loved the sheep, there were too many people, too many sounds, and too many things to look at. Our typically fun, intelligent little boy had seemed like a shell of himself. He covered his ears and sat down on the ground. He didn’t want anyone to touch him and he just wanted to go home. This wasn’t the first time it had happened either. Anytime Owen has these types of sensory overloads, it throws him off for the rest of the day and he usually ends up hiding under a blanket until it’s time to go to bed.

Courtesy of Morgan Coulter

After we explained our concerns, the pediatrician said we would have to get a second, maybe third, opinion, but she felt confident diagnosing Owen with Sensory Processing Disorder (SPD). She also told us she was going to refer him to a specialist for an Autism Spectrum Disorder (ASD) evaluation as well, since she is not an expert on ASD. I didn’t know a lot about SPD or ASD but she gave me a bunch of referrals, set us up with an occupational therapist, and helped me find the resources I needed to learn more.

Courtesy of Morgan Coulter

We had just started getting some appointments and referrals in March 2020, right after Owen’s third birthday, but COVID-19 shutdowns started happening, so this brought any progress we had to a screeching halt. We eventually got a telehealth appointment with a developmental-behavioral pediatric specialist who got to know everything about Owen. This included his ‘quirks,’ as we called them at the time, and his intense interest in dinosaurs. I’ve never met a 3-year-old with so much knowledge about a pachycephalosaurus before. This doctor felt confident giving Owen a preliminary ASD diagnosis, agreeing completely with our pediatrician’s SPD diagnosis, and also referring him to get an evaluation for Attention Deficit Hyperactivity Disorder (ADHD).

Courtesy of Morgan Coulter

It was a breath of fresh air having a team of professionals listening to me and helping me get the help my son needed to thrive. Since the initial diagnosis, Owen has been receiving occupational therapy, has had to get an EEG to see if he was having any seizure activity (he wasn’t), ADOS testing to confirm an ASD diagnosis, and now we’re learning as much as we can about different therapies that may help Owen regulate his emotions and impulses. This is an overwhelming journey in and of itself, but doing this all during a global pandemic adds an element I, like everyone else, was not prepared for.

Courtesy of Morgan Coulter

Since we’ve gotten some more resources and education under our belts, day-to-day life has been much less stressful for all of us. Owen is a lot less anxious now that our days are made up of visual schedules, sensory-friendly spaces, and anything and everything dinosaur. His two favorite things to do are read books and help take care of our chickens. Did you know chickens are related to dinosaurs?

Courtesy of Erin Cummings

As Owen’s mom, I can sit here and write from my point of view, but I don’t truly know how it feels to be inside that beautiful head of his. I can only do my best to advocate for him in every way I know how, and hope when he is older, he will look back and say, ‘My mom loved me, she listened to me, and she did her best.'”

Courtesy of Erin Cummings

This story was submitted to Love What Matters by Morgan Coulter from Millville, NJ. You can follow their journey on Instagram and YouTube. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful perspectives from special needs moms:

‘Of course he doesn’t, he’s absolutely fine!’ Everyone laughed it off. My little boy wasn’t going to talk, EVER.’: Mom to son with autism urges ‘acceptance starts in the home’

‘What happens to my girl when society realizes it’s not ‘cute’ anymore? How do I make people see the beauty I see?’: Mom to daughter with autism urges us to challenge our idea of beauty

‘They whispered to each other. ‘How can that be?’ My heart sank. ‘He doesn’t seem THAT different. It must be a mistake.’: Mom surprised by son’s autism diagnosis, ‘We just chalked it up to ‘every kid is different and learns at their own pace.’

‘My husband took the diagnosis as an insult. ’What is your problem?’ He began to cry, ‘I just don’t want anyone to hurt him.’: Parents to son with autism say ‘he is meant to be exactly who he is’

Give other parents strength and courage who are continuing to learn about their children with autism. SHARE this story on Facebook or Twitter.

For our best love stories, subscribe to our free email newsletter: