It’s OK That I Worried About My Son’s Autism

Everyone said I should be worried about my baby. They say it to every new and expecting parent. There are pages of things to fret over and fretting is definitely on the agenda.

I can remember back to the testing that’s done during pregnancy and the laundry list of concerns they screened for. You’d shake in your boots and pray for “nothing bad”, without naming specifics. The doctors and professionals would give you that look of reassurance and say the words that would ring in your head.

There’s nothing to worry about.

Ah. Feels nice. You remember that as time goes by and the tests come back with flying colors. The worry was misplaced. You had no reason for anxiety. Your baby doesn’t have, well, any of those terrible things.

Most of these syndromes, diseases, and ailments I had never heard of. They’re named after people or internal organs I wasn’t familiar with. In some cases, they came with explanations that send chills up your spine. Luckily, my son didn’t have any of those things. He was good. No worries.

One item on the list of worries that everyone knows, though, is “autism”. It’s treated like the worst-case scenario during these early days.  As they poke, prod, and check the charts, the doctors always remind you that you have “nothing to worry about.”

That main worry, in my mind, was probably autism. It’s the worry on most people’s minds, right? What else would the doctor be telling you not to worry about? The implication is that, if it was autism, that’s when you should worry. But it’s not, so you don’t. Ah. Breathe a sigh of relief. My son was great. We had no reason to worry…yet.

worryAs time went on, though, the delays started to become apparent. He wasn’t sitting. He wasn’t rolling. He wasn’t doing all the things that babies normally do. People outside of our home, who only saw him for a few brief moments here and there, didn’t notice. But we did.

So, we took him to doctors who would always default to a calming approach. They’d give all sorts of alternatives to our worst-case scenarios. They’d say “it could be” this and that “some babies do” that.  All the while, they’d assure us, even in the face of worrisome signs, that still “there’s nothing to worry about.”

Yet, I was worried. I was terrified. My fear was that these delays would become apparent to the outside world, who would surely call us out on them. So I started to do what I could to cover it up. I tried to hide who he was from the eyes of loved ones.

If he started clapping incessantly around friends or family, I’d rush to hold his hands to stop him. He’d wrestle them away and my heart would drop. I saw the red flag flying in the wind and, the less I could stop it, the higher it would flap for the world to see.

When he would ignore high fives and greetings from others, I’d allow them to make excuses for him.

Hi, buddy. High five. High five. No? Oh, it’s OK. He must be tired.

Yeah. Tired. At two in the afternoon. After his three-hour nap. As he rolls around on the floor wide-awake. He’s exhausted.

I’d go along with it because, in my mind, the world was crashing down. My son was almost definitely on the road to autism and, since the age of negative nine months, that was the biggest worry that we all had. It was the reason for numerous doctor’s visits and tons of reading material. This wasn’t a drill. This was going to be awful, right? Why else would they tell me that it was something worth worrying about all that time?

It tied my stomach up in knots. After all, the day that he would finally be branded with this scarlet A, I’d officially have a child with autism. When that happens, our lives would be…

Well, fine.

Yeah. Fine.  Today, my son is eight and he’s non-verbal with autism. We’re living in that scary future in this moment. The worst-case scenario came true, and he’s the best son I could have ever asked for. How could that be possible? It just is, that’s how. I love him more than words can say.

At the time, autism was an unknown. It was something that, no matter how many stereotypical sitcoms are out there painting autism with a broad brush, you can never fully prepare for. It affects every person and family differently. So, as a father, I was justified in my worry. I didn’t know what it meant for any of us.

If I could go back now, I’d tell myself to relax. My boy grows up to be unique and wonderful. He’s sweet, loving, and kind. We watch TV together, laugh to music, and wrestle around like any father and son would do. I’d tell myself that autism won’t take him away from us, it’ll make him perfect for us.

bunnyOf course, this was all a mystery years ago. I had no clue he’d turn into the star he is now. All I knew was the terror and darkness. I was taught that autism is something to screen for and work to prevent. Getting it was equivalent to failing a test. People would question you about breast feeding and organic foods. The stares and questions could crush the spirit of any new parent.

I look back on those years now and the concerns I had. In many ways, it can make me sad because, on it’s face, it looks like I saw having a child with autism as something terrible. It’s a mindset that, as a loving father to a child with autism now, should make me angry and ashamed. In reality, I didn’t even know what having a child with autism was. I just knew to fear the things I was told to fear. As a dad, I wanted my baby to be perfect. Being told, early on, that they’re less than some idealized version of perfection put forth by a medical journal should make any parent worried. If you love your child, that’s what you do. That’s nothing to be ashamed of.

It takes a little while to learn who your kid is and how he or she will fit into your life. You discover that you were never really afraid of “autism”, but the unknown of what it will mean for your family. Your view of the future gets thrown into disarray. You couldn’t accurately tell yourself who or what you child would be as the years went by and that’s terrifying. The irony is that you never can, whether they’re on or off the spectrum.

As time passes, life stops being terrifying. It becomes reality and it becomes your normal. You find yourself okay with situations you never thought you could accept because those situations are nothing like you envisioned. Everything turns out fine, even when it doesn’t.

I love my son. My whole family does. It’s because of that love that I once worried so much. It’s also because of that love that I don’t have to worry anymore because it’s helped him grow into the wonderful young man he is today.