It Took 16 Years For My Son To Get His Autism Diagnosis

More Stories like:

Young Motherhood

“It was 21 years ago, but I can still remember the feeling of disbelief as we drove away from the hospital with our first-born son. I was one month shy of my 20th birthday, but had only really been driving for a little over a year. I was pretty positive that someone was going to stop us as we left the Labor and Delivery ward to tell us we were breaking some kind of law.

My boyfriend and I were definitely unqualified and not much more than children ourselves. Nevertheless, somewhere underneath that shock was also a quiet determination that I focused on.

That is where my childhood suddenly ended and my motherhood began. What I remember most (aside from being scared out of my mind) is how much I loved my son Andrew from the very first moment I found out about him. I had no idea how I was going to take care of us, but I was not going to let that stop me from doing my very best for him. I felt like I suddenly had a purpose and drive that I’d never felt before.

Becoming A Military Spouse

Clifford and I met through mutual friends and had dated on and off for a year or so. I met him over Christmas of 1999 when he was home on leave to see his family. He had been stationed at Fort Bragg, NC, but when his enlistment ended, he came home, and we struck up our relationship again. Cliff was so excited to be a dad.

His own biological father had been absent from his life, so he was eager to prove that he was going to be a good father. At the time when Andrew was born, he and I were both working for minimum wage at a Blockbuster Video Store. Seven months after that, we married and found out I was pregnant again.

A few weeks later, September 11th happened, and as we watched those terrible events unfold on TV, we had two realizations. One, that we were not going to be able to support two children on video store wages. And two, the pull to return to duty and serve for Cliff was strong.

military dad holding two baby boys on couch
Courtesy of Julia Paddison

It wasn’t long until we were stationed up at Fort Lewis, WA and fully integrated into life as a military family. Andrew was the easiest baby any parent could hope for; I was pretty sure I had nailed the parenting thing. When Jonah was born in May of 2002, the contrast between the two experiences was absolutely jarring.

While Andrew’s birth had been easy, Jonah’s was long and difficult. He cried day and night due to feeding issues from GERD (reflux). I was exhausted, struggling with postpartum depression that was exacerbated by long periods of solitude when Cliff had to leave for long training missions. When Jonah’s symptoms were finally alleviated with medication, I was sure things would start to get easier, but it turned out to only be the start.

When I became pregnant with our third son Caleb, Cliff received the orders we were dreading, but knew were inevitable. A one-year tour in Iraq not only meant his life was going to be in danger, but it also meant I was going to have to go through pregnancy and birth alone, with a three-year-old and two-year-old.

Early Autism Signs

Looking back, I am not sure how either of us got through it. Somehow, we did, but not without life changing scars. During his deployment, the Army had offered families of deployed soldiers in-home visits from social workers to help spouses cope and overcome challenges that might arise.

I took them up on the offer because I was struggling and deeply lonely. I looked forward to my talks with Kate, the worker who was assigned to me. She was kind and compassionate to me at a time when I desperately needed it. I felt like we became real friends by the end of our visits.

three young boys on top on each other in pyramid shape
Courtesy of Julia Paddison

It was Kate who first watched Jonah play and made an offhand remark to me. ‘You know, my brother has Autism… I am not qualified to diagnose anything, but a lot of what I am seeing in Jonah reminds me of how he was as a toddler.’ That was the first time I had heard the word Autism as a description for the nearly unmanageable and rigid behaviors that had begun to develop in my two-year-old son.

I began to check out books associated with Autism and sensory-processing disorders and poured myself into trying to understand what it all meant. Could this be what Jonah was experiencing? It was like a lightning bolt had gone through my body as I dove into the world of Autism, and I began to realize that this IS my son.

I spent months reading and assimilating all the information I could find with the hope we could help him. The price of war is often shouldered by families and ours was no exception.

While we were so lucky that Cliff came home alive, we did not come out of it unscathed. He had decided he couldn’t do it anymore and wasn’t going to renew his military contract when he came back from Iraq. He suffered from crippling PTSD, something I had no idea how to help him with. I could write a whole other story about the journey of pain and growth Cliff and I went through over the past years, both together and individually.

I will summarize and say, instead, that decades later we have a deep, mutual respect and love for each other. At the time though, we could not maintain a healthy home environment for the children and remain together.

Diagnosis Difficulties

Cliff has always remained in the boys’ lives and has always been the best dad he can be with the tools that he has. For that, he will always have my gratitude. Newly single, with three young boys, the stakes were suddenly a lot scarier. I held down a job at a local grocery store to pay the rent for our tiny two-bedroom apartment.

At the time, the union I worked under did not offer health insurance for its employees until 2 years of being on the job. The boys had coverage through state Medicaid, which was great for medical coverage, but did not cover any sort of mental health services at the time.

At three years old, I had Jonah evaluated by our local school district. They agreed that Jonah showed significant signs of Autism and although they could not diagnose him, they offered him services in the form of developmental preschool and an IEP (Individualized Education Program). When Cliff and I separated, however, I had to move us closer to my job in the next city over.

When it came time for Jonah to begin kindergarten in the new city, I submitted his IEP along with his enrollment paperwork to our local elementary school. I had expected to have a lengthy conversation with the school about his needs, so when they called me to set a meeting, I wasn’t alarmed. They explained that since some time had passed, they’d like to re-evaluate him to see where he was at currently.

That made perfect sense, so I waited for them to complete that process. What happened next, was the beginning of my realization that I was going to be alone in advocating for his needs, and that I was facing an uphill battle.

autistic boy outside on the first day of kindergarten
Courtesy of Julia Paddison

Inadequate Education System

The result of that meeting was a denial of services because the evaluators concluded he was more or less academically on track. I was gobsmacked. How could they not consider or factor in the profound disruption his behavior (later proved due to Autism) was going to have on his education?

Without a diagnosis though, he was left without any legal protection and the school was apparently not obligated to help him. Jonah, even as a young child, was always kind and sweet. He wanted to hug everyone and be everyone’s friend, although friendship with peers always eluded him.

In the same breath, he struggled with how to manage his emotions when he was overwhelmed, often resulting in crying fits and meltdowns. This is very common for people on the spectrum of all ages, but particularly in young children before they have learned tools to cope.

The school’s solution to these meltdowns was to issue suspensions as punishment. His first suspension was in kindergarten. You read that right: kindergarten.

When I argued with the principal that this was a direct result of them withholding necessary services from him, she balked at me and said, ‘Your son is NOT Autistic. He can make eye contact when he wants to. The only thing your son is, is manipulative.’ She went on to tell me that the only way Jonah would receive any help from them was if I presented a diagnosis.

This began a years-long mission to get an Autism diagnosis for him. He needed that label because without it, it was clear that Jonah was never going to have the chance of a fair education. We also experienced firsthand what happens when children do not have access to mental health services due to income disparity and lack of resources.

Misdiagnosis

For the first few years, I ran into Medicaid either not covering an evaluation, or the evaluators not accepting Medicaid as a form of payment. When I tried to self-pay with a provider whom I thought I had carefully vetted, I found out at the intake appointment that he did not in fact do Autism evaluations.

The hundreds of dollars that I scraped together for months was gone in a single, useless session. When Jonah was 7, I managed to get an office job at a DME company that provided affordable insurance. We waited in a year-long queue to be seen by one of the largest Autism clinics in the Portland metro area, only to be disappointed once again.

After a day of hearing, cognitive, and learning assessments, the final diagnosing doctor met with us for just 15 minutes. He looked at Jonah’s chewed fingernails and announced that he didn’t think this was a child with Autism and that this was a child who was just dealing with ADHD and anxiety.

This was a major blow; I felt the air being sucked from my body. Maybe they were right and I was wrong this whole time? Was I crazy? In my head and heart though, it just didn’t add up.

By fourth grade, Jonah could barely read or write. He withdrew further into himself at school to the point where he would zip himself up in his coat and sleep through classes without interruption.

Finding New Love

It was around this time that I began dating a man named Clayton, who would later become my husband. Clayton and I had met when I worked at the grocery store job long ago. He had spent countless lunch breaks hovering around my bakery counter while we lingered on each other’s words until his lunch hour was over.

He was so wonderful with the boys, jumping straight into teaching them history, building model airplane projects, and introducing them to his passion for cars. Clayton himself is on the Autistic spectrum, with magical Autistic superpowers that allow him to be a Sheldon-like walking encyclopedia of vintage car facts and history.

man and woman kiss outside in car
Courtesy of Sarah Costa Photography

I cannot explain to you what his love and devotion meant, and continues to mean to myself and the boys. We settled in as a family together, moved into our first home and were married in 2013 in his grandmother’s backyard.

Moving into a different part of the city allowed the boys to change schools at last. When Jonah entered 5th grade, our luck finally changed. The teachers at the new school were alarmed at where he was at academically, and agreed to try a 504 plan. It wasn’t long before they realized he needed a full IEP.

Successful Start

I wish I could say that it was the open and shut answer to everything, but it was at least a fantastic start. Jonah, having never learned what success felt like in his life so far, had developed coping mechanisms and habits that did not serve him academically. Shutting down was his primary mode of getting through the day.

Over time, as he started high school, teachers who did not know the struggles he had been through dismissed him as uninterested in learning. It took many meetings and discussions to overcome the bias they had against him, and for him to receive the level of accommodations he desperately needed to shine.

Meanwhile, over the years, Clayton and I had tossed around the idea of having a child together. As I was nearing my late 30’s, however, nothing had come of it, so we decided to shelve the idea. Life always seems to have a great sense of humor though, and in late 2018 we discovered we were expecting a little girl.

After the shock wore off, I began to feel a deep, resonating sense of gratitude. I was excited to experience motherhood from the start again, only this time through a much more peaceful and less chaotic lens than my early 20’s.

baby girl, swaddled in pink, in brown basket outside
Courtesy of Sarah Costa Photography

Health Scares

Shortly after the birth of our daughter Charlotte, I began to feel concerned at the frequency in which she was vomiting after feeding. It brought back memories of how Jonah struggled, so I brought it up at her next checkup. We quickly began to realize that something more sinister than reflux was going on.

From the start, Charlotte struggled to hold down any of her food. Since I was nursing, I tried first to eliminate all the common triggers from my diet. When that didn’t work, we switched to a sensitive infant formula at the suggestion of her doctor.

Almost immediately, Charlotte began having episodes where she would vomit violently, followed by profound sleepiness and lethargy. I took her to visit after visit with her pediatrician.

GI tests, specialists, EKG’s, and blood tests revealed no clues as to what was going on. We were at a loss. Her growth began to halt, and she started to miss important physical developmental milestones.

After particularly bad vomiting sessions, Charlotte would sometimes go limp and gray, prompting us to rush her to the hospital. Then, after rest and fluids, she would typically perk back up again, leaving the ER doctors shrugging their shoulders.

young girl colors a coloring book in a hospital bed
Courtesy of Julia Paddison

Desperate for answers, I decided to take her to a different pediatrician in the hopes a fresh set of eyes on the situation would help. That decision ultimately proved to be the key to unraveling the mystery. During our first meeting with Dr. Cronkhite, she said, ‘I think I know what this may be. Have you ever heard of FPIES?’

Food Protein Enterocolitis Syndrome

FPIES, or Food Protein Enterocolitis Syndrome, is a little-known food allergy condition that can affect children from birth until around age 5. Most kids at that point outgrow it, although sometimes it lingers into adulthood.

Unlike a typical IGE food allergy reaction, researchers speculate that FPIES occurs as an abnormal T-cell response in the gut to whatever food is misperceived as toxic. Symptoms include profound vomiting and diarrhea after an hour or two of consuming the allergen. In Charlotte’s case, her triggers turned out to be dairy protein and corn (and all corn derivatives).

Corn, as we know, is in just about every single food in our country and is especially prevalent in infant formulas. For Charlotte, there was only one formula on the market that did not contain corn and the milk protein was broken down enough she could tolerate it. I feel enormously grateful we were able to completely stop future episodes.

We had all expected her growth to start catching up again. When that didn’t happen, her doctor referred us to a pediatric geneticist to see if there was something deeper perhaps going on.

Char Syndrome Diagnosis

After completing the WES genome sequencing, Charlotte received her diagnosis of a rare genetic condition called Char Syndrome. Char Syndrome is extraordinarily rare, with only around 100 or so documented cases worldwide. While she has many of the facial characteristics of the condition, she seems to be only slightly affected.

So far, it seems to primarily affect her growth and physical milestones timeline, such as sitting, crawling and walking. This fall, Charlotte started preschool with our school district’s inclusive head start preschool program and she is absolutely thriving. She was granted an IEP effortlessly with her diagnosis and I am so thankful we are starting out her education with a firm foundation.

mom and dad holding baby girl
Courtesy of Julia Paddison

Our Happy Ending

Jonah, now 20 years old, received his autism diagnosis of ASD level 2 at the age of 16. Both his therapist and psychologist were stunned that there had ever been any doubt as to if he was on the spectrum. He is the kindest, most loving human you will ever meet, who loves hugging anyone who will hold still.

As of his last IEP meeting, he is on track to meet all of his graduation requirements by 2nd semester of this year, and will then begin a special adult program to help him begin the transition into adult life. I couldn’t have more pride for how far he has come.

autistic man, age 20, standing outside in olive colored jacket
Courtesy of Julia Paddison

Looking back on my journey through motherhood so far, I can say it has been the hardest yet most gratifying experience of my life. I have learned that there is no such thing as a perfect parent. What matters is to never stop believing in the possibilities and potential that your child has within them.

As a parent, you are your child’s first and sometimes only advocate in life. Although life can sometimes feel overwhelming, we are capable of immeasurable love. It is through this love that we can move impossible mountains for our children, even when we start out as only children ourselves.”

mom and dad smiling outside
Courtesy of Julia Paddison

This article was submitted to Love What Matters by Julia Paddison. You can follow her on InstagramJoin the Love What Matters family and subscribe to our newsletter.

Read more stories like this:

‘When I found out you had autism, I’d never heard of it. It didn’t matter—to me, you were amazing.’: Mom shares ode to autistic son

‘Shut up and be quiet!’ An innocent, amazing child was crying, but he was also present and doing amazingly well.’: Mom advocates for autism awareness after shocking encounter

Do you know someone who could benefit from this story? SHARE this story on Facebook.

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