I was asked recently to describe the events leading up to my son’s autism spectrum diagnosis.
It was not as easy as I thought it might be.
Where does a momma begin?
The early years of crying, of sensory overload and exhaustion?
The preschool years, when it became clear that something was different? Not less, but certainly different.
The school years, when every single day became a struggle against noise, boredom, smells and social pressure?
There was the question of how many diagnoses do I want to disclose? Autism was the first, but unfortunately not the last.
And finally, is this even mine to share? How much of my son’s diagnosis story is mine?
And, after thinking about these questions and very real concerns, here is how I responded –
“I will tell you the story of my how my son was diagnosed with autism, but only from my perspective. One day, I hope he can share his.”
How My Son Was Diagnosed With Autism
When my son was 4 weeks old, I knew something was different. He cried all the time. He slept for less than 45 minutes at a time. He seemed to be miserable in his own skin.
It was scary. It was heartbreaking. It was exhausting.
At his one month well child check-up, amid tears, unwashed hair and sweatpants with milk stains, I got the courage to ask his doctor if anything was wrong. I was worried it was just me. This was my first baby, and in the back of my mind, I was sure I was doing it all wrong and hurting my poor son.
I started to sob when I said, “I think there is something wrong with him.”
The doctor almost laughed out loud, and I saw him write, “Hysterical first time mom,” in my son’s file.
My body felt flooded with shame.
It was me.
Because of this one doctor’s reaction, I became truly convinced that everything going on with my son was my fault. That somehow, I was overreacting. Or not disciplining enough. Or disciplining too much. Or not sticking to enough of a routine. Or being too regimented.
I was sure that no matter what, I was the problem. Worse yet, I was sure that if I could just get it together as a mom, my son would be OK.
Over the years, things changed. My son still struggled. Socks, shoes, tags, noise, smells, eating certain foods – all were a daily concern. He began preschool, and it was immediately clear that he was a bit different. He lectured the other kids, instead of playing with them. He taught himself to read. He fixated on certain topics with a precision that his teacher had never seen.
I was once again sure I was the problem. I was sure I had failed him and now my son as suffering as a result.
The pressure and the burden was immense. The more interactions I had, the more I found further proof of my inability as a mom.
When he would melt down in the grocery store, every single time – it seemed clear to me, from the looks on all the other mom’s faces, that I was missing something important.
When I would share that he would cling to me at night and want me to put pressure on his torso in order to finally calm down and sleep, I was told that I was spoiling him and training him to be needy.
When I asked a therapist about helping him learn to wear socks and shoes, I was told he must have emotional problems related to my divorce. That, and why didn’t I just force him to wear shoes and socks and then he would get over it?
When my son melted down at a New Year’s Party several weeks before we were married, my sweet husband unknowingly contributed to this when he said, “I have watched enough episodes of Super Nanny to know what needs to happen here.”
By the time he was eight, school was torture for him every single day. The bells, the smells, the other kids teasing, the boredom over already knowing all the things the teacher was teaching the class – school was a constant struggle.
And the meltdowns began. The violent thrashing, the self-injury, the crying for hours and hitting his own head on the walls in the middle of the night.
I was desperate to figure out how to help him, so we made an appointment with a psychiatrist. Again, I was sure this was a behavioral problem I had somehow created.
I sat down in the psychiatrist’s office, ready to take the blame, convinced that I would do anything he said to help my child.
He asked me to start at the beginning, and tell him what my son was like as a baby. I was about five minute into my description when he stopped me.
“I am pretty sure there is something neurological going on here. What you are describing is not behavioral and it is not poor parenting. We need to get you a referral for an evaluation quickly.”
I was stunned. I was relieved. I was scared.
And again, I felt responsible. How had I missed it? Why had I allowed others to influence what I knew deep down, to be true about my son?
Four months later, I was sitting in a developmental pediatrician’s office. When she said, “Your son is most certainly on the autism spectrum. He needs help immediately,” I was strangely calm.
It all made sense. For the first time in my son’s young life, it all added up.
I was sad, to be sure. But sadness wasn’t my primary emotion.
I was angry that I had listened to so many other people, instead of my own heart. But anger wasn’t my primary emotion.
I was worried about what this meant for the future. But worry wasn’t my primary emotion.
The emotion that I felt the deepest and the strongest in those first moments post diagnosis was peace. There was a sort of settling that happened in me in that moment.
“OK, it’s autism,” I thought. “We have options now. We can figure this out. We can get help.”
I left the office with a list of resources and therapies. I also left with the Bible verse that this site is named after, swirling in my brain.
Remember not the former things nor consider the things of old.
Behold, I am doing a new thing; now it springs forth, do you not perceive it? Isaiah 43:18-19
When I sat down in the car, the silence enveloping me, I had one overriding thought, over and over again.
My little boy is going to be OK.