I watched her closely as she watched my 3-year-old son, who hadn’t looked her in the eye one time in the past hour.
I saw when her brow furrowed, when she looked pensively at her notes and back up. I urgently pointed out when he did something that I wanted her, needed her to be aware of.
“Look, did you see that? He looked at me.”
“Did you hear him? He was saying ‘ball.’”
I spoke nervously and quickly, telling her about all of his progress. I told her how he loves to play with his brothers, how affectionate he is, how swift and sure he is when he runs and jumps.
I told her other things, too. I told her how he seems to drift away sometimes and how I have to get at eye level or tickle him or kiss him repeatedly before he giggles and comes back to me.
At the end of the appointment, she came around her desk and said, “I can see why others haven’t wanted to say this. He has language, though there’s a clear delay. And he has at least average cognitive capability, though this is just one appointment and I’m sure he does more at home. But I’m going to have to say that he’s mildly on the spectrum.”
My son has autism.
I knew this before he was born.
Maybe not that exact diagnosis, but the pregnancy was just … different. My father had died just months before. I was devastated and depressed. I gained so much weight that I didn’t recognize myself in the mirror. I told my OB-GYN that I was concerned about this—the stress, the depression, the weight—and how it could negatively impact an otherwise healthy pregnancy.
“Oh, don’t worry,” he said. “You’re healthy. Just try to relax."
Toward the middle of my pregnancy, I was diagnosed with gestational diabetes, and later with gestational hypertension. One weekend, I developed a horrible headache and my doctor said just take it easy and make sure you come to your next appointment.
Once I got there, they did the usual tests. He came back and said that my protein and blood pressure had spiked. “Do not pass go, do not collect $200. You leave here and go directly to the hospital.”
“Stroke levels,” the nurses told me in worried tones as they wheeled me to the delivery ward.
I was having a baby three weeks early.
The epidural didn’t take, so I was in so much pain that the room turned black and began to swim. “HE’S COMING!” I screamed at my husband. We were in the room alone, and instead of paging the nurse, he ran for the door and sprinted down the hallway to get her.
Our son was born about five minutes later, the only one of our three sons I was too weak to hold or nurse immediately because I just didn’t have the strength. When I was finally able to hold him, I stared intently at all 5.5 pounds, 22 1/2 inches of him and immediately began to take inventory.
Toes? Check. Fingers? Check. Limbs moving? Check. Crying? Check. Hearing and vision tests normal.
But I couldn’t shake the feeling. “Three weeks,” I told his pediatrician. “Is he considered premature? I know that hypertension can slow blood flow to the brain; is he OK?” She assured me that 37 weeks was well within normal delivery range, so I went home and tried to focus on that and how much he looked exactly like my father.
Still, I couldn’t shake the feeling. He was born with two whorls in his hair, and through my doctorate from Google University, I understood that to mean a difference in brain development. I mentioned this to his pediatrician at his first visit and she said, “Oh, that’s perfectly normal. It’s when they have multiple whorls that we worry.”
Still, I couldn’t shake the feeling.
He developed appropriately, a little late walking and babbling, but so were his older brothers. By the time he was 18 months old, though, I noticed that he wasn’t saying much else past the babbling.
Again, I mentioned this to his pediatrician, who said, “Oh, boys develop slower than girls, and children develop at their own pace in general. Stop worrying; he’s fine.”
“I know he’s fine; he’s perfect," I snapped. "But if there is something, something like autism, early intervention is key.”
“He’s fine, Kirsten.”
When he was 22 months old, I went back, this time with demands, not questions. “Look, his language is not developing. He says about five words, then he replaces them with five different ones. His vocabulary is not building. I’d like him to be tested for autism.”
“It’s too early for that, but I agree that we should get him in with a speech therapist as soon as possible,” she said.
So, for the past year and a half, we’ve taken him to speech and occupational therapy twice a week, the most that my insurance will cover. His vocabulary expanded, though he was still delayed. He sings all the time. His motor skills continued to grow rapidly. He’s the best athlete in the house, and with our older all-ball-everything sons vying for that honor, that’s saying something.
But then the sensory issues started. He was afraid of bouncy houses and elevators. He would cover his ears when the dog barked or there was a knock at the door. And, as much as his vocabulary grew, it still wasn’t growing at the “average” pace.
I quizzed several of my friends who gave birth around the same time that I did. “Is Jackson talking?” “Is London talking?” “Is Pryce talking?”
I watched as associates posted Facebook videos of their children born months after my son, and they were saying the alphabet, and pointing at cars and trucks.
And I knew.
So I quizzed other friends about learning videos and gluten-free diets, and holistic treatments such as cannabis oil and vitamin E/omega-3 regimens. I scoured autism websites and YouTube videos late into the night. I read article upon article to my husband, who said, “He’s perfect; that’s all I need to know.”
But he doesn’t have the guilt of blaming himself.
I know better now. I know that I can’t blame myself. I know that autism can occur in perfectly healthy pregnancies. I know the data and the statistics and the anecdotal evidence. I know about global developmental delays and pervasive developmental disorder—not otherwise specified (PDD-NOS). I’ve heard the elders say, “Tommy didn’t talk until he was 6, and look at him now. He won’t shut up."
I know that a diagnosis of ASD (autism spectrum disorder) does not define my son but, rather, is one part that makes him uniquely, beautifully, wholly him.
Still, we live in a cruel world for children who are different, and for those who are not. We live in a world full of stigma and misinformation, and the anguish I felt hearing that diagnosis was not for myself, or because I think my son is less than any other child or flawed in any way. I cried because I want him to have all the opportunities and love and possibilities that we all want for our children, and I can’t promise him that this world will be kind to him. I can’t promise that to any of our children, but ableism is one of the worst “isms” there is.
We go to therapy every week. We watch him laugh. We watch him swell with pride when we applaud all of his daily victories. We watch his brothers treat him with such protective care that it melts our hearts. I still tear up thinking about the first day he said, “Mommy.” I had waited for so long.
We watch him grow and grow and grow, and we love him and cheer him on every step of the way.
I would not change him, my silly, smart, spontaneous boy. I wouldn’t change a curl on his head. Though we will be taking him for a second opinion, I already know.
My son has autism, and he’s perfect just the way he is.