My Child’s Autism Diagnosis: Fear Vs Reality

When you have a baby, there seem to be endless concerns swirling around in the air. For me, the big one was a bizarre one. It was that, while holding my newborn, I would trip, fall, and crush them beneath me.

This was a major worry. I had it for both my children and, because of that, I held them like bibles made of glass. With both hands in front of me open, I’d lay them there and gingerly step through the house. My wife at the time had inquired why I was doing this. She figured I didn’t know how to hold a baby.

When I told her it was because I didn’t want to splatter our infant on the dining room floor beneath my body, her face froze into a grotesque glare.

Um, OK. Then keep up carrying like that then.

That was a weird worry, I know. They didn’t mention it in any parenting classes or “expectant father” books. It felt more personal to me and my strange way of thinking.

Autism, however, was more of a broad worry.

Why was it a worry, though? I didn’t know much about autism at all. All of my knowledge came from TV and movies. Autism was a far-away term that didn’t personally affect my life. In fact, it wasn’t until I was awaiting my child’s arrival that people started talking about it around me. Once they did, the floodgates of dread opened.

The terminology connected to it was all doom and gloom. You were told about “warning signs” and “red flags.” There was “testing” and “special schools.” Do this, don’t do that. Watch for this and beware of that. Autism is presented to expectant parents the same way bear attacks are presented to new campers.

Everything about the potential for having a child on the spectrum was centered around what I, as his parent, could do to prevent it. It was so overwhelming that by the time I suspected my son might have autism, I felt I had done something wrong to “cause” it.

That was genuinely my first instinct. I watched as he missed milestones and demonstrated many so-called common traits. There was little eye contact or interaction when he was doing something he was more occupied with. He didn’t try to speak and he didn’t move the way his sister did at his age. By the age of one, he didn’t yet sit up on his own without toppling like an adorable little bowling pin.

No one else noticed, but I did. It ate me alive inside. I believed I had failed my boy. This was the dreaded autism that I had been warned about avoiding. He wasn’t going to talk. He wasn’t going to walk. He wouldn’t love me or hug me or even know I’m his dad. Autism was here and our lives were sure to be doomed.

Ten years later, we’re not doomed at all. In fact, we’re great.

So…does he talk?

No.

Lucas doesn’t have verbal language. I learned early on, though, that language isn’t just verbal. It’s receptive. While my son couldn’t verbalize “hello” or “I’m hungry,” there were more important things he could learn to do. He could understand what they mean. While it took a little more effort and unique teachings, I had to make sure he knew what “food” meant. I had to make sure he knew his name and what I was saying to him. The process was slow, but it happened.

Even in terms of verbal communication, there were other avenues besides his voice to let his intentions be known. Lucas uses an iPad with buttons in order to express himself. He has hand signals and, with me, an unspoken way of communicating. Sometimes it’s a look or a gesture. I know because I’m his dad. I get him and he gets me. We communicate because we learned how to do so together.

Does he walk?

Yes.

He walks like a pro. We went through some tough times, though. Like many kids on the spectrum, he was a runner when he was young. There were many times that a trip to a park was like engaging in a never-ending game of tag. I worried he would wander off or, worse, dart into danger. That was a scary time. Luckily, that phase is over for now. Although I know that there is always a chance it could pop up again.

At first, his walking was erratic. He’d barrel through the den, knocking over everything in his path. It was a disaster. Lamps fell. Toys were trampled. Our cats ran for cover. Of course, I couldn’t lecture him about it. He wasn’t doing it to be bad. He didn’t understand how to control his movements or even why that was important.

Then a physical therapist suggested setting up towers with my daughter’s blocks in the living room for him to knock over. When he did, we’d make him pick them up one-by-one. It was the best idea we had ever been told. The game of “Godzilla”, as his sister called it, was born.

That’s all it took. He understood that he had to watch his step. Soon, he was running through the house like Michael Jackson on stage. There were side-steps, moonwalks, and dodges. He had become a pro and all it took was understanding him a bit better to teach him. Without that effort on our part, he’d probably still be squashing things with his ever-growing feet.

Does he love me?

Does he hug me?

Does he know I’m his dad?

Yes.

The funny part is that those are the three things I was most convinced would never happen. Talk? Maybe. Walk? Perhaps. But show affection or feel a connection to me? Those were the traits that, back when autism was a boogeyman word, felt like an impossibility. In my mind, autism meant a closed door to any form of connection.

After all, that was the presentation, right? That’s how they make it seem in pop culture. Autism is seen as something that locks people away from interpersonal relationships.

I think that is the main issue when it comes to new parents and autism. It’s not so much that I knew very little about autism. It was that I thought many things were true about autism that weren’t.

Do some people on the spectrum have an aversion to affection? Sure. But some people off the spectrum have an aversion to affection. Some people off the spectrum abhor eye contact or chit-chat. Some people off the spectrum want things ordered. People, all over, are different.

My son’s autism is unique to him and nothing I read or saw ever prepared me for it. The fears that I had when he was first diagnosed were all based on an idea of a person that he didn’t grow to become. In the end, your child is whomever you raise them to be. There may be alterations to how you teach them, but you ultimately teach them how to be the best person they can be. That’s what I did.

The person he is today is amazing. Some things he does. Some things he doesn’t. But he’s the best son I could have asked for. We never gave up and we never gave in. Fears aren’t real. Only reality is.