posted: Aug. 16, 2021.
As part of an ongoing series, Alliance ABA is featuring stories by parents of autistic children, as told to us. Names have been changed for privacy.
My son, Baxter, was diagnosed at almost three years old with autism spectrum disorder. ASD, they called it. I heard that term a few times at my daughter’s school – she’s five years older than Bax – but never knew what it meant. Never thought to ask. I just remember thinking it sounded so clinical. So serious. Terminal, or something.
There was never anything medically serious of note in our family. No one’s ever had anything like cancer or heart disease or mental illness or anything like that. Maybe diabetes. My aunt, I think. But autism? Definitely not. Or not that we’d heard about. I mean, there could have been, and no one just talked about it. I know for sure I was really hesitant about telling anyone about Baxter’s diagnosis.
Yeah, about that. In the first week, I think, I was like, “Okay, so this is real, there’s a name to everything we’ve been going through,” and I was okay. But then it started to hit me, and I broke down. I cried to my husband, David, who seemed so much more solid than I was. I remember lying in bed and hyperventilating and worried about the world I was leaving for my son, worried about how it would treat him. I even started thinking catastrophically, like, “What about when David and I die? Who’s going to take care of him? What do we do now to make sure he’s protected forever?” It was really bad. It was like, “How will anyone accept him? He’s not normal!”
I think, even though it was him I was worried about, there was a lot of self-pity in there too. It was about not knowing how to be a better parent. There was blaming, too, wondering if there would have been anything I could have done differently when I was pregnant or when he was an infant.
I think it’s just stuff you go through as a parent. At least I did.
I’m not sure if it was instantaneous or if it was over time when I just realized that I was doing the exact thing I was worried that people were going to do. I was judging my own son. I was judging myself as a parent. And I thought, you know, no matter what… Baxter is always going to be my kid. That’s my son. If I don’t advocate for him, if I don’t get up and dust myself off and be strong for him, if I don’t give him every opportunity to dust himself off and advocate for himself, what am I doing?
The first tough thing was telling my family. Like I said, we’d never really had anything in our family before that meant we would huddle over the dinner table and go, “Okay, we’re in this together!” That’s really fortunate, right? So I didn’t really know what their take was going to be.
I called my parents, my sisters, David’s parents, his siblings, and we had a big dinner at our house and no one knew there was anything coming. And then I told them.
They all looked at me like I was crazy… for being worried! They were so supportive. They hugged me and David and they had a thousand questions that neither of us could answer but we felt so loved, and I thought, Baxter’s going to be okay. He’s got an army here. We’re okay.
The general public is a little different. Bax is six now, and he’s non-verbal. I feel like all eyes are on us in certain situations, and it makes me sad because I know they’re judging my kid, and I just want to wrap an invisible coat around him sometimes. But most of the time, I actually want to put him on a throne. I want people to see his beautiful face and his sparkling eyes and his huge smile and know that this is what Baxter looks like. It’s not what autism looks like, because autism, I’m sorry, doesn’t look like one thing. It’s a beautiful prism. Baxter is not autism. He’s not a poster child for it, and if anyone learns a little more about autism because they’ve met him and love him, great. But if anything, I want people to see him as a person – beautiful, unique, strong, silly, smart, all on his own.