Dear Autism

The following is a guest post

Dear Autism,

I saw you long before I acknowledged your existence. I witnessed you when Judah shook his Melissa and Doug duster and how he searched relentlessly for it every day. I skeptically enjoyed the way he mimicked all of his shows, suspecting that you were right around the corner. And I pondered your presence as Judah continuously rode the escalator up and down and repeatedly.

As Judah grew, I saw more signs of you. But I was undecided. You cloaked yourself so coolly underneath the diagnosis of Down syndrome. Lucky for me, I had long ago joined forces with other mommas handling that extra chromosome with care. When famous beauty Amanda Booth declared in an Instagram post that her son had Autism Spectrum Disorder, I saw the signs she mentioned. I had been tallying them for years. And so off we went to Judah’s Behavioral specialist to get the dreaded diagnosis. He saw what I saw and doled out information with a happy heart as I muttered to myself “why can’t I get on board with you?”

If I’m being honest, close friends who have autism in the family, painted a grim picture. School settings solidified that confirmation bias. And I knew very little. I knew Rain Man. I knew a boy from Lourdes camp who could tell me what day my birthday would be on in 5 years, and I knew the family friends who swore vaccinations were to blame. It is here where I will mention that vaccinations causing ASD has never been proven. Nevertheless, I thought you were something to be sad about, something to hate, a deficit.

The truth is? Coupled with Down syndrome, you make things harder for sure. And when I watch my little loves who have Down syndrome without your extra pesky diagnosis, I wince with envy. What I wouldn’t give for Judah to clearly communicate his needs to me. What I wouldn’t give to stop the cycle of making predictions and testing my hypotheses to crack Judah’s code.

But Autism, you aren’t bad. Just like, pizza isn’t bad, or dessert isn’t bad. You just got a bad rap somewhere along the line and it’s hard for me to shrug off the label. It swirls around me like an annoying fly. Someone once told me, don’t think about that label. Think of the behaviors and try to stop those. See behaviors as unmet needs and you will succeed.

A long time ago I wanted to open my own private investigating business with a friend. We were going to call it “Shilow Industries” and I was only half kidding. Well now, I get to put my detective skills to work.

When Judah shakes his spatula or wand, it is you Autism, that is making him express how he is nervous or excited. When he lies on the floor, on top of his Elmo, you show us how he is tired or overstimulated. When he runs away, he is sometimes happy and playful. But sometimes he wants to be doing something different and needs to be distracted. When Judah drops and flops, he is not ready to do what we are asking. And when he hits, it is because you are blocking him from using his words to tell us why he’s mad. You make him frustrated that he can’t.

You are a puzzle. I assume it is why you are represented as a puzzle piece? And I only have the corner pieces in place. But I am intuitive. I am hyper-vigilant. I am a regular Columbo. Judah has a communication device and ABA Therapy. He has a community that has walked this path before us and he has parents who are in the education field. We are armed to work with you. We call a truce. We will tirelessly keep working on the puzzle.

Look, I may not have picked you to enter our life because it makes the hard even harder. But I know you are a mysterious marvel. I know you do not hinder Judah’s intelligence; you simply mask it. I know you are not a threat; you are opportunities for growth. And I know you are no match for the love we have for our Judah.

Here’s to a bright future.

In Solidarity,
Judah’s mom