The small, too-bright room would’ve made almost anyone feel overstimulated, but my 3-year-old felt it more than the rest of us. He flapped his arms, climbed on the table, and asked to go back out to the waiting area.
But I barely heard him — I was staring at the developmental-behavioral pediatrician, who’d just confirmed what I already knew.
“Your son has autism spectrum disorder,” he said, before rushing on to say, “and autism is 80% genetic. What are your family planning goals?”
I looked at him blankly. “Uh … I don’t know? I’m currently not exactly fertile.”
He hurried on
“You’ll want to think carefully before continuing with any plans for another child. There is a chance you could have another child with autism. If I were you, I’d get blood tests done to assess the risk.”
I spent the rest of the day in a fog. All I wanted to do was curl up in bed with my boy, so that’s what we did. Even though I’ve been struggling with infertility, I felt cold and sad at the thought that we couldn’t have another child because of autism.
But the next day, I snapped back to the full version of myself. I thought about all the things the doctor had said.
And I was pissed
The anger grew stronger when I thought about the other thing the doctor had said, that my son should probably not have kids because they’d have a high risk of autism, too.
Basically, the doctor made autism sound like a disease. A cancer spreading through my son, causing him to flap his arms, chew on random objects, climb everything, hate loud noises, need extra guidance in social situations, and struggle to learn to speak.
But I looked at my baby. I took stock of his quirks.
And I realized that, far from being a damning sentence, my son’s autism diagnosis is a gift.
When he runs screaming into another room at the sound of our dog howling, I now know there’s a reason.
When he gets frustrated with a friend and starts jumping up and down, flapping his arms and yelling “No, silly!” (a line from his current favorite show, Charlie’s Colorforms City), over and over and over, I know there’s a reason.
Knowing that he is autistic gives me more empathy and understanding for his unique experience of the world. I find myself worrying less about why he’s different and appreciating him more for who he is.
I spent the days after that doctor visit scouring the web for essays written by autistic youth and adults. After all, they’re really the only people who can help me slide into my son’s shoes and understand exactly what types of support are helpful, and what types are harmful.
Discovering this autistic community was its own gift
I signed up to receive newsletters from the Autism Self-Advocacy Network, whose tagline is “Nothing About Us Without Us,” and whose board is almost exclusively composed of autistic adults.
At night, as I lay my precious son down to sleep, I whispered to him that he’s autistic — beautifully so. That he has a right to a full and productive life like anyone else.
One day, if he wants to, he can have children
That life might be more difficult for him because the world sees autism as scary and sad but that there’s a whole community out there of people just like him with powerful voices that need listening to.
Over and over, I tell my son that I would be happy to have another autistic child. That doctor? He put his advice where the sun doesn’t shine.
Because my son is not scary. My son is not someone you should pity.
But he and all his autistic peers are people that we should all work tirelessly to welcome into the wider world with open arms.
