My son is autistic.
It might sound like a stupid and contrived thing to say, but the hardest part of that sentence to say for me is the “autistic” part. Let me tell you what I mean and don’t mean by that.
What I don’t mean is that “autism” is the hard part of that sentence. It’s definitely true that there was a time when I had no idea how to carry around that simple, gargantuan fact. But when that gave way to the normalization of our new life, the only way I could make myself say it out loud was to say that he “has autism.” I could not bear to make him synonymous and inseparable from ASD by calling him “autistic.”
I’m saying it again: it’s not “autism” that’s hard for me. It’s “autistic.”
But I’ve been doing this unfortunate thing lately. I’ve been reading. A lot. And watching YouTube videos, and following autistic people on social media. I’ve started reaching past parents and trying to listen to people who really have autism.
And consistently, the vast majority of people demanding “people first” language (i.e. “a person with autism”) is neurotypical parents or relatives like me. It’s the ones who are actually autistic who are asking to be called autistic–even going so far as calling themselves “an autistic.” And, really, as counterintuitive as this type of language may seem to us, isn’t it them we should be listening to?
Here’s the raw deal, folks. I am devastated by this. Crushed.
Not necessarily because I should be. It’s my emotional, gut response. In fact, if you have autism and you’re reading this, I hope you’ll bear with me, a mom who really has to work sometimes to understand what you’re going through.
See, when William was diagnosed, it was very painful for us. The doctors weren’t direct with the diagnosis, but instead chose the words “he qualifies for the diagnosis of autism” (are there more steps we need to take toward an actual diagnosis or something?). It was like the words “yes, he has autism” were too harsh and scary. They practically whispered it, gave us sympathetic looks, looked at each other sadly like “this poor little baby and his poor parents!”
Undeniably, the suffering he endured as a result of his inability to communicate, to sleep, to calm down, to focus…huge. Our suffering was a close second because we couldn’t reach him and help him through these frustrations.
So, when I think of that time in our lives, the idea that he should not be separated from autism and might actually appreciate being called “autistic”…it felt like I was no longer allowed to separate him from his suffering or my resulting grief.
I was perfectly happy to accept him and his differences. His little quirks are full of life and I love them. But it’s the suffering. It’s the dang suffering.
Where I went wrong, however, was when I inserted myself in the equation. I couldn’t stand to define him by the grief that I felt over his suffering. So I separated the two. I called him a person with autism.
But something is happening in our family right now.
That one day I added together months of overflowing frustration in him and realized he wanted a social life, something tipped. It started rolling and gaining speed and volume. Bits and pieces I’d gathered and rejected over the years tumbled together into a collective mass, and this thing, whatever it was, got bigger. And I started to realize what it was.
Awareness. I’m aware that he’s aware. And it’s rolling right toward a fork in the road: acceptance of his autism goes one way, and rejection of it the other way.
I know what this means. It means “the talk” is coming. We’re going to have to explain to him what it is that makes him different. When we have that talk with him, we pick a direction by how we choose to talk about it.
Explaining to a person that they are a “person with autism” is a certain kind of conversation. It’s the kind of conversation that says “you have this thing.”
Think about it. What kinds of things do you have?
Pets. A cold. Shoes. Hair. Coffee. Nearsightedness.
They’re not global or pervasive things. They don’t affect your personality; you don’t fundamentally identify with them, and a lot of them come and go. You distinctly want them (you may even love them) or you don’t, but there’s not much of an in-between. These are things that are good, or they’re bad, but most importantly—they’re isolated parts that don’t affect the others. Even nearsightedness is this way—you put glasses on and it just…goes away.
But the conversation that uses the language “autistic” is a different kind of conversation.
What kind of things are you?
You’re sensitive. You’re energetic. You’re mischievous.
They’re complex. They affect every corner of you, and they have equally beneficial and challenging aspects. And where you find those things challenging, you find ways to channel those personality traits and accommodate them. You’re sensitive? That’s a good thing. You see people’s feelings that others might miss, and you’re compelled to support them when they struggle. But your morning could be completely hijacked because you saw footage from a grisly accident on the news. Maybe from now on, you’ll screen your news intake through internet headlines. That’s the definition of an accommodation.
But for me to say you “have sensitivity” dismisses the complexity of that trait. It quietly insists that, although it’s a part of you, it’s categorical. It automatically assumes that you pack it up for when you’re “happy” or when you’re “exercising.” And oddly, it still defines you. It’s just that it defines you by my opinion of sensitivity and where I choose to see it on you, where I expect to see it.
Autism is not something William will be able to separate from himself in any way or tuck neatly into a category. He’s autistic when he’s happy, sick, playing soccer, thinking about birds. It fundamentally affects the way he experiences those things. I might try to separate him from it when I look at him, and it might even be something that makes me feel good about myself—like, I’m the kind of person who sees a person, not just their disability. But can I—should I—ignore the fact that he will identify on a deep level with the struggles autistic people face? The things they’re proud of? Do I really want to send him the message that he should not?
I realize now that it would almost be like pulling another one of my kids aside to tell them that they have a problem being a total follower, but it’s not their fault; they were born that way. I love them anyway and I will do whatever it takes to help them be more of a leader throughout their life.
Even if I spin that as positively as I can, and even if it does explain some things for my kiddo, they won’t be able to help walking away from that conversation feeling at least a little bad about the way they are and the way they see the world.
I still don’t have this conversation formed completely in my mind. I’m still putting it together. But I need to start by thinking of him differently.
My son is autistic.
Forgive me—I still cringe when I say it. I have a long way to go, and I’d like to hear from you about who you know with autism and what they have to say about it—whether you live with them, or you just know them from Twitter.
One of my favorites that I’ve just discovered in the past month is YouTuber Amythest Schaber, who does the show “Ask an Autistic.” Here’s a particularly informative and helpful episode from her.
I’d encourage you to click through her episodes—they are seriously changing how I parent.
Also on my list: Faith, Hope, and Love…with Autism—a blog written by Philip and Lisa Reyes, a young autistic boy and his mom. Every parent of an autistic child needs to see this at least once! Here is one of my favorites, where he discusses his life before and after he learned to communicate via letterboard.
One of the things these resources are teaching me is that even before I knew it, the person William is now is…who he’s always been. The diagnosis didn’t change him. It changed me, and it changed my path to get to know him, to understand him.
And now I understand acceptance, five years in. A bit of a parental bummer, but you know what that means, though?
It means that, now, the conversation can start.