From Discovery to Diagnosis: How I Learned Both of My Children Had Autism
It’s fair to say all moms are overworked and underpaid. That’s just part of the contract that involves caring for little people. But what no one really signs up for is overtime. And that’s what I got. Double overtime actually.
Also known as two children with special needs.
By the time my daughter was one, I knew she was exceptional. That’s not doting, first-time mom talk, it’s truth. Campbell was speaking in full sentences by twelve months old. She knew all of her colors, shapes, letter sounds, and could count by ones, tens, and twenties without breaking a sweat. My mom friends liked to tease that I must spend all day drilling her with flash cards, but nope, she just had a brilliant brain. She took everything she saw and stored it.
But as she approached two, the initial pride I felt about her intelligence turned into a pit of worry. Campbell was growing more rigid. She had really extreme reactions to simple things falling out of place, like a lost Happy Meal toy or an episode of her favorite show that accidentally got erased. They weren’t normal toddler tantrums, they were unbearable breakdowns. Screams and cries that looked like they physically pained her.
She was also fearless. She would run from me at the mall and never look back; wander away on the playground. No person was a stranger. This may seem like a sociable sign, but as I observed all of her peers gripping onto their mother’s shirts when afraid, it broke me. Would my daughter even know, or care, if I was gone?
Her words were always filling our home. As I said, she spoke early and often. But eventually I realized almost everything that came out of her mouth was from a show or book. She would memorize the words, and use them appropriately, but there was never any free thought. When I would say, “I love you, Campbell,” she would reply back, “I love you, Campbell.” There was a disconnect even in our love.
I brought these concerns up to my husband, friends, and her pediatrician, but no one would validate my concern. I was brushed off and told she’s just too happy, or social, or smart to have an issue. The general consensus was just to wait and see what she would become, so I did. Knowing already what would eventually be confirmed at three-years-old:
My daughter had autism.
The term Asperger’s is no longer (it’s now considered high-functioning autism), but if that was still in existence it would describe Campbell. She doesn’t spin in circles, or flap, or have any obvious physical differences, but her brain does indeed work in a different way. A way that makes social skills and conversational speech extremely difficult for her. To this day, she still prefers to play alone.
Receiving a diagnosis was not an “I told you so” moment I was proud to have. To say I went through a deep period of grief would be an understatement. When I was pregnant and found out I was having a girl, my mind immediately went to the world of pink, proms, and wedding gowns—mommy/daughter moments that I thought were a birthright for birthing that gender.
I dreamed we’d be best friends. We’d like the same foods and books. We’d travel together. I’d host sleepovers where I’d be the perfect Pinterest mom (even just for a day) and her friends would never want to leave.
As soon as I heard autism, all of that went away.
I didn’t know a single child or adult on the spectrum, so fear gripped onto me tight. The day she was diagnosed, I opened a private Instagram account and used it as a journal just for me. The very first post was a picture of me holding her. She’s smiling; I have dark circles under my eyes from crying so much. I remember that day while she napped I buried my head into a pillow and screamed. How was I going to do this?
But the truth is: you just do it. You just show up. That’s what mothers do. We’re made of steel, especially the special needs ones. We bend, we do not break.
So every day I got up and met the world in whatever shape I was in. I gave myself permission to be angry, and sad, and confused—or whatever emotion rose to the top that morning—and then I put it all back inside of my pocket and went about my day. There were kids to be fed, after all.
And eventually we found our stride. I found what worked best for Campbell. I learned what triggers to avoid and which ones to push her toward. I put her in everything—and I mean everything—preschool five days a week, soccer, t-ball, run clubs, art camps, theater camps, gymnastics. I exposed her to all kinds of people and scenarios so that the fear of transitions could subside and fought to find therapies that would help her. Often I felt overwhelmed that her success or failure rested solely on me doing what was right. I didn’t want to fail her.
But alas, time granted us some favors. Campbell began to mature. She began to communicate more efficiently and found her pace in preschool. Now at four, she reads on a fourth grade level. She likes dolls, and donuts, and collecting rocks. She gets annoyed by her little brother and continues to think outside the box. She says she likes Anna more than Elsa from Frozen, because Anna is brave and real.
And so is my little girl.
We now all agree that princesses and pink are overrated anyhow.
So that’s one child with special needs. But just as I was learning to integrate autism into our world, I got another whammy. My son—a newborn at the time, now two as well—is also on the spectrum.
Eli could not be more different than my daughter in regards to his diagnosis and his day to day demeanor. He is strong and rugged. I don’t think I’ve ever seen him cry. Not for a boo-boo and certainly not for a bad day. She talks a lot, he talks very little. She likes things in order, he is destructive. Campbell can pretend play with ease, Eli is literal—he has to be taught what toys are and what to do with them. My daughter has accompanying anxiety; my son has traits of OCD.
Campbell was two when Eli was born, so I spent the entire first year of his life helping her and analyzing him. I constantly went back and forth questioning whether he was or wasn’t. Every time he refused a food I speculated it was a sensory issue instead of normal pickiness.
But by the age of two, the writing was on the wall. He had little speech or desire to follow social norms, and when he began wandering off on the playground too, I just knew.
Eli’s needs are more clear cut. He’s academically gifted too, but in a quiet way which means communicating his daily needs is often difficult. He has some words, but not many. He has rigid behaviors that include holding doors open in public until everyone has passed and counting to ten before getting into his car seat. If you interrupt these patterns, prepare for a massive meltdown.
Unlike his sister, he couldn’t cut it in mainstream preschool so he now attends an autism specific classroom. This gutted me at first—the idea of missing out on Moms & Muffins, and picture days, and all those other silly mainstream milestones—but my son is progressing now. He has real friends, and angelic teachers, and a smile on his face when I drop him off and when he returns home. No reason at all to be sad about that.
My kids are growing and gaining daily—and so am I. That woman who jotted down her grief on the pages of a private Instagram, has now made that same account public. Gone are the days of hiding in plain sight or pretending my children were supposed to be a certain way. No one is promised proms and grandchildren. No one is guaranteed an easy existence. That’s in the fine print of that parenting contract. We agree to bring them into this world, and then if we’re doing it right, we let go of our expectations and trade it for appreciation.
I wouldn’t have signed up for overtime—I wanted a smooth road, not one with speedbumps—and to be honest, there’s still some days I question why the only children I will ever have both had to be autistic. Then I cry about it and carry on. Because we can grieve and still believe. And these last few years have taught me just that.
Every child is a gift and has a gift. These two are mine. They’ve given me purpose and perspective.
Which makes any amount of work undoubtedly worth it.