Originally Published December 3, 2018

The fact that my son has autism is not kept from anyone. Of course, since he’s non-verbal, most can figure it out for themselves.

For the first few years, however, no one could. There were what-ifs and doctor’s visits and nothing concrete. All we knew was that our son wasn’t hitting the milestones that we expected and we were trying to figure out why.

As a parent, it’s a pretty lonely situation to see everyone around you reaching points with their child that you have yet to see your child do. Babies are walking, talking, and seemingly doing acrobatics while mine was fighting every step of the way. I had guilt and worry. All I wanted was for my boy to be “OK”, whatever that means. It was all I could think about, even though I wasn’t saying it out loud.

Early on in Lucas’s life, he and I did a nightmare Music Together class just as his limitations were becoming more apparent. There was a mom that usually sat near me in the mat circle, but I never got her name because I was pretty socially checked during these times. Between silently comparing my son to the other babies in the room and trying to keep him from speed-crawling out the door, I was far from making small talk.

I could tell that she thought Lucas had special needs. I could see it in how she looked at him and how she spoke to me. She would ask questions that seemed pointed. To this day, I’m not sure if she was trying to get me to admit something or if it was my paranoia. They are both equally plausible.

Is he excited for Halloween?

Or…

What preschool are you taking him to?

Or..

Do you guys sing the songs together at home?

I couldn’t be like, “I don’t know. Probably the one for children with Autism. And you know damn well we’re not singing these songs at home, dipstick.” I would nod and grin like a moron but feel so unbalanced inside. Lucas couldn’t have cared any less. He was busy fighting me to put his face on the dirty floor tiles. I assumed it was because he liked the cold. I could feel this woman next to me watching and taking notes.

The reason I never enlightened this woman wasn’t out of shame for my son’s autism, it was because I wasn’t even sure he had autism. I mean, how could anyone really know? He was so little and at an age when babies are still new to words. He could just be lagging behind. Right?

What if I was being melodramatic or impatient? Perhaps it was on me for not trying the magic technique that breaks through? What if a million what-ifs were true and this one possibility was not?

The biggest worry of all? What if this little boy didn’t even have autism and I went around telling everyone he had Autism? What if one morning, he gets up and says to me, “Yo. Why did you tell everyone I couldn’t talk?” 

When we had “special education” added to his in-home lessons, I told no one. My fear was that one day, if he eventually “catches up”, then everyone will tell him that he once needed “special education”. Sound ridiculous? It was ridiculous.

That’s how bendable my thinking was at the time. I crafted a scenario where he not only has a shocking turnaround in development, but the few adults we trust to tell now will grow old and mock him for it. That was my thought process. It’s the first time I ever wrote it out and it looks ridiculous to read.

Here’s the thing, though. All of that might sound crazy. It might be a laundry list of outlandish reasons for not talking about the fact that my one and only son most likely had autism. All of that might be true, but, to be honest, it doesn’t matter. None of it does.

That’s because I didn’t need any reason to tell or not tell people about his autism until I was ready. He’s my child. I could tell them whenever I decided was right for us. No timelines. No expectations. It was a family decision and, as long as I was doing what I needed to do behind closed doors to make sure he was receiving the best care possible, I didn’t have to say a word to anyone for whatever reason. There’s no shame in that. We do things when we’re ready.

Life seemed to get a bit easier when I started saying it out loud. No longer did I have to stare at him with a blank expression when a cashier said hello and then waited for a hello that I knew wasn’t coming. There was once a time when I would wait along, hoping this was the moment he would finally say something. Now, I could look at the person with a dangling salutation and say, “He doesn’t speak. He has autism. He can wave though.” 

The biggest irony is how the time period when I didn’t speak about his possible Autism was because I was scared of the dark times I assumed would lay ahead. Looking back now, that time was the darkest. All my stress over the uncertainty that I would have to encounter was actually the most stressful and uncertain time of all.

I wish I could go back and tell myself that it was all going to be fine. Even if he doesn’t speak, as is the case today at age seven, he’s still going to be awesome. I’m still going to love him and be able to share moments with him. We’ll have a relationship that might not be conventional but is unique and special. Only good things are on the horizon, even if they don’t appear that way at the time.

As much as I hate to recall some of the feelings that those times drummed up, I needed those weeks and months of introspection to know how wonderful my son is. You need that time to stress, wonder, and eventually see that the opposite is correct. That’s how you find appreciation, rather than acceptance. It was one of the darkest times of my life, but without it, I wouldn’t be able to see the light he radiates today.

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