The Black Box

A terrible thing happened a few weeks ago that I can’t get my head around. I am unable to access the emotions I felt that day. Like, the thing happened and I’ve been on lockdown ever since then. Flat. But aware. Restless? It feels like the ominous calm before the storm, but the storm already came.

I don’t feel able to write about it other than in the same It’s fine, I’m fine, we’ve got a good plan in place way I shared with my therapist. I’m afraid if I dig any deeper I may bleed out on the page (monitor?) here and nobody wants that. Or maybe that’s exactly what you want. It’s what I want when I make time to read any essay.

I started writing on the internet more than twenty years ago. Many years before Milo (formerly Violet) was born. When they were diagnosed at four, I was worried that writing about the very personal stuff we were dealing with surrounding their autism diagnosis wasn’t my story to share. And so I shared nothing. Ever. Until they became a teenager.

Feeling protective over Milo’s privacy is one thing, but depriving myself of writing about my experiences as the mother of a child on the spectrum and missing out on the community of other parents going through the same thing wasn’t the best way through. I can see that now.

Milo's diagnosis happened at the same time as my divorce from their dad. It was the hardest time of my adult life. They were my firstborn, so I had no frame of reference. I didn't know what was simply them, what was part of being a little kid, and what was autism. I didn't know what I didn't know.

Any time I write about Milo now, I run it past them. But writing personal medical details about a young child who had no meaningful understanding of how the internet works felt and still feels wrong to me. So here I am, barely tapping the surface of writing about it as Milo approaches their eighteenth birthday.

Several years ago I caught an epside of the Australian version of Love On The Spectrum and it really bummed me out. I can’t quite put my finger on why, it was so long ago, but I think now that I wasn’t ready to deal with the grief over Milo’s struggle that I’ve stored up over the years.

Like the black box of a crashlanded plane, my own confusion and pain about parenting an autistic child was shoved away so I could be the best mom ever for my kid. That’s what I thought I was doing, anyway. I was partly wrong, though, I think. If I had been able to write about it openly, with Milo’s privacy top of mind, I could’ve benefited hugely from the thoughts and experiences of others.

I detested Love On The Spectrum, at first. Hated it. Hated those parents farming their kids out to this show that seemed to delight in highlighting the quirks of people on the spectrum. It landed as exploitative and I shut it off.

Years later, Cory and I turned on the American version. One of the mothers was outlining her hopes and dreams for her teen’s future and I had a full-blown panic attack on the spot. Could not stop sobbing. Couldn’t breathe. Her thoughts were my thoughts, her fears and worries so mirrored my own, I lost it.

I had never heard anyone say my thoughts out loud before. I had parented my firstborn on an island. Their dad and I had stopped speaking. Until that moment, I didn't even know there was an island to leave. I hadn’t felt seen as the parent of an autistic child because I didn’t really put myself out there as one.

For nearly eighteen years I've been protecting Milo's story so fiercely I accidentally buried my own. I see now that because I’m a writer I was so worried about guarding Milo’s privacy I lost track of my story. Not just online. But in my actual life. I don’t even know my story. It’s been hidden away for so long that I don’t know how I feel.

What did I deprive Milo of by not connecting with other parents?

There is so much more awareness surrounding autism now, but awareness isn't the same thing as acceptance. Out in the world, people still stare. They don’t mean to, for the most part, but it’s A Thing. They use autistic as shorthand for weird and read stimming as strange instead of self-regulation. They still expect autistic people to contort themselves into shapes that make everyone else more comfortable.

People say they understand autistic people until autism behaves like autism. Every time Milo walks into the world, I know they're walking into a place that still asks them, over and over again, to explain themselves or try to hide themselves.

The fear isn’t autism.
The fear is the culture.

I'm afraid of what happens when the world keeps asking a person to become less themselves in order to belong.

I saw that Milo’s dad wrote a bit about it and that loosened the stranglehold on my nervous system. The words are coming, a little.

I thought my child was dying.

In that emergency room, their stepdad hovering helplessly at the foot of their bed, their dad running into the room after the scariest drive of his life and BOOM.

A seizure caused by the overdose.

I thought you were dying.
I thought you were dying.
I thought you were dying.

I stood next to your bed, hunched protectively around your dear face as if I could curl my entire body into the small space next to your beautiful head and I lived and died several lifetimes. Hands fluttering helplessly around you as your body bucked explosively. All I had to reach you with was my voice I’m right here milo mama is right here with you milo I’m with you the whole way and you’re going to be just fine milo it’s ok milo everything is just fine milomilomilomiilo I’m right here and everythings ok milo it’s mom it’s mom it’s mom it’s mom it’s mom milo it’s ok milo it’s ok i’m right here i love you milo i love you i love you it’s gonne be ok milo you’re just fine and i’m right here i’m right here milo milo milo milo

I could not stop talking. Terrified they’d think I had left them. Terrified these were my last words to my child.

I could not stop talking to my baby.

Listen. Milo is okay. We’re okay, too. Mostly. This is not new for us. And maybe that’s why I need to write. Anyone who has experienced a suicidal child knows the fear and the dread never go away. Hypervigilant parenting. Endlessly evaluating moods while trying to be chill on the outside, insides an inferno.

We are lucky. For reasons that have everything to do with timing, access, and privilege, we are lucky. So many families aren’t.

Autism isn’t the tragedy. The tragedy is convincing people that the only way to belong is to become someone else.

“Normal” is not some neutral truth. It’s a social agreement built by the people with the most power, then enforced on everyone whose bodies, brains, desires, or ways of being make the room uncomfortable.

Fuck that. And fuck a world that asks autistic people to become less themselves.