When Autism Was Still Our Secret

My son’s Autism is not a secret. Of course, since he’s non-verbal, most people can figure it out for themselves. There was a time, though, when we were just learning about the possibility of not just Autism, but everything. All we knew was that our son wasn’t hitting the milestones that we expected and we were tying to figure out why.

brdAs a parent, it’s a pretty lonely situation to see everyone around you reaching points with their child that you have yet to come close to. Babies are walking, talking, and seemingly doing acrobatics while mine was fighting every step of the way. I had guilt, worry, and just wanted my little guy to be alright, whatever that means. It was all I could think about, even though I wasn’t saying it out loud.

When I was in that nightmare Music Together class during this period of uncertainty, there was a mom that usually sat near me in the mat circle. I never asked her name because I was 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?

What preschool are you taking him to?

Do you guys sing the songs at home?

I couldn’t be like, “Uh, I don’t know. Probably the one for children with Autism. And you know damn well we’re not singing these songs at home.” 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.

I know the immediate thought is that we didn’t speak of it due to shame. It may come off that way, but it wasn’t the reason. After all, Autism or any additional needs my child might have would eventually become a part of our lives. If true, I wasn’t shameful of that. I couldn’t be. If anything, I was learning to embrace whatever might come our way. The unknown can be terrifying and no matter how hard the truth was to swallow at the time, we had no choice but to take a big gulp and move forward. No. There was no shame in Autism. That’s not why it was a secret.

The reason why was that I wasn’t even sure he had Autism. I mean, how could anyone really know? He was so little and at an age where babies are so new to words. He could just be lagging behind.

What if I was being melodramatic or impatient? Perhaps not trying the magic technique that breaks through? What if this little boy didn’t 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” and he would be embarrassed. I kid you not. That’s how bendable my thinking was at the time. I had 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.

aisThat’s because I didn’t need any reason to not tell people about his Autism until I was ready. He’s my child. I could tell them whenever I wanted. No timelines. No expectations. It was my call 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.

The craziest part is that life seemed to get a bit easier when I started saying it out loud. I forget the age or event that caused me to tell others, but I remember when it began. No longer did I have to stare at him with a blank expression when a cashier said “hi buddy” and wait for a hello that I knew wasn’t coming. I could look at the guy and say, “He doesn’t speak. He has Autism. He can wave though.”

That’s the irony of it all. That time period when I didn’t speak about his possible Autism was frightening because I kept assuming there were so many dark times 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.

I can’t go back, though. Not just because I don’t have a time machine but because I needed those weeks and months of introspection to know how wonderful my son truly 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.