Chasing Fireflies

I have been chasing autism for a long time.

Thirteen years ago, it started as a question that flickered across my mind every few days. It was little more than a seed, really—a kernel of doubt that I could not quiet.

There was something about my son Jack I couldn’t quite put my finger on, and I found myself watching him all the time, and noticing all the things he didn’t do. Then I took out an imaginary pen and paper, and without even realizing it, I catalogued each one on a regular basis.

He doesn’t babble at all.

It’s weird, he never looks at me.

I wonder if he’ll ever say Mom.

Then every now and again, Jack would smile at a truck passing by our house, or press his chubby fingers together to sign for more milk, and hope would smile softly from the corner of the room.

And this is how I passed the time before Jack’s official diagnosis.

Hope.

Doubt.

Hope.

Doubt.

Autism.

It wasn’t supposed to be like this. I did well in high school. I worked in college waiting tables. I didn’t have a lot of boyfriends and I went to graduate school and afterwards I got a job in marketing. I married a good, kind man.

I was supposed to have a normal family with normal kids. I was not supposed to be tallying every move my child made, like some weird balance sheet of behavior and progress.

And yet, here I am.

Now, thirteen years later, autism reminds me of a firefly at dusk. It can be beautiful at times, with bright colors and a soft glow. I am drawn to it—compelled to know it, to chase it, to hold it in my hand.

And so, as the purple twilight turns deep and shadowy, I follow it. This lovely thing, it leads me along, my palms outstretched, but it’s light it not bright enough to illuminate my way. I trip on rocks and branches, and I fall to my knees.

Lately, I am a night owl. I never used to be. But these days, my evenings stretch on forever, because Jack takes a zillion hours to settle down in his room at bedtime. He’s anxious, you see, and he feels the need to walk up and down the stairs one billion times to check and see if I’m still sitting where he left me.

Mom? Where. For are you.

So after his eyes finally close and I have a few minutes to myself, I stay up and I read articles about teenage gunmen who fell through the cracks of society’s mental health net, and I read about children stolen from their families way too soon, and I think about little bodies, ripped to shreds from the bullets they had no chance of outrunning.

I think about video games that make violence seem fun and glamorous.

I think about heaven.

I hurt. I hurt for everyone.

Yet, I cannot lie. I waited to see how long it took before autism came into the discussion. I can’t help it. I see everything through this lens now.

It didn’t take very long.

Maybe this young man was on the autism spectrum. How can I know? I never met him. I don’t even live in Florida.

The thing is, I am very protective of the spectrum diagnosis. If I could, I would wrap my arms around it and shield it with my own body so it would never be misused, or misunderstood, or bandied around like a convenient excuse.

My son Jack has autism. His primary challenges include deficiencies in executive functioning, significant delays in communication, overwhelming anxiety, and self-regulation.

He has trouble seeing a plan through to the end, and keeping his thoughts organized long enough to solve a problem, or think reactively.

He lacks empathy, and has difficulty recognizing common emotions in others, such as happiness, or sadness, or giddiness, or rage.

He is bound by rigidity, and routine, and schedule. He thinks in literal terms.

And to be honest, this is just the tip of the autism iceberg. There is so much more–low muscle tone and perseverative behavior and little working memory, to name a few things.

So what does all this mean? Let me try to explain.

Say Jack decides he wanted to bake some brownies. First, he will fixate on the perfect time to start making them, and then he’ll repeat the time over and over to himself and to everyone else in earshot.

For 4:00. To make my brownies.  

At exactly 3:58 he’ll announce this plan one more time, and then he’ll get out the box of brownie mix and start lining up the ingredients. He’ll check the directions a thousand times and tell himself over and over that he needs two eggs. He’ll mix everything up in a bowl, but he’ll get distracted by some music and forget to grease the pan.

He’ll worry that the house could burn down if the oven gets too hot because he isn’t watching it. He’ll exclaim that we would all die in the fire.

He’ll put his hands over his ears and scream if a spoon clatters to the bottom of the sink and makes a noise he doesn’t expect.

He’ll use no less than four oven mittens to cover his hands, and he’ll take the pan out of the oven at the exact time the box recommends. He will not check to see if they are done. He will not consider that different ovens cook things faster or slower, because the directions state eighteen minutes, so eighteen minutes it is.

Maybe you will walk into the kitchen just as he pulls them out of the oven. They smell good, and you are excited to try one. Maybe you take a bite too soon, and you shriek because you burned your mouth—not the kind of burn that a drink of water washes away, but the kind that lingers on your tongue for hours.

Jack might—might—turn in your direction when heard you scream. He might even ask you what happened.

And when you started to explain how the brownies were so hot and you hurt yourself, well, he’ll probably turn around and walk away. This isn’t because he is mean or cruel or standoffish. It’s because other people’s emotions overwhelm him. They confuse him.

If you were to separate the characteristics of Jack’s autism out one by one and examine them, they might seem like no big deal.

After all, lots of people don’t organize their thoughts well. Many, many thirteen-year olds would have to re-read the back of the Duncan Hines box to check how many eggs they needed.

We all know someone who prefers routine to spontaneity, and, let’s be honest, we’ve all met someone who lacks empathy.

But the difference is, Jack has all of it. He has the perfect combination of symptoms and challenges and issues and social delays and communication struggles.

Why am I telling you all of this?

Well, I guess I want you to know that fireflies are special. Once you hold the delicate blossom of light in your own fingers, you realize the luminescent color doesn’t belong to just anyone.

In other words, autism it is not a catchall for every person who is lonely, or scared, or different.

And that’s all I’m going to say about that.

I get it. As a nation, we are searching. We are folding upon one another and firing off our opinions and it is divisive and scary and real. It feels as though we will never agree.

I, too, am searching for answers in the middle of the night. I want an easy solution—one that combines gun control and addresses mental health problems and keeps children safe.

It wasn’t supposed to be like this. And yet, here we are.

I know one thing. I know that in the midst of our chaos—our collective shame and rage and fear—hope waits. Hope is sitting very still in the corner, watching while doubt steals the spotlight. But like a chubby toddler on a balmy summer evening, hope will rise up, stand tall, and triumph.

Mom. For try. My brownie.

All we have is each other.

Hope is being able to see that there is light despite all of the darkness.

-Desmond Tutu