If you had told me two months ago I would be writing today about how my daughter has autism, I would say that couldn’t be true. I didn’t see it two months ago.
I still didn’t see it in April when her developmental pediatrician pointed out the signs as he wrote in his book and watched her play. But when he ended his interview with how he felt certain my daughter was on the spectrum, I felt myself become numb. Suddenly, all the sound disappeared from the room and I could hear my heart beating in my ears.
Then I found myself becoming quietly angry with him while he casually pointed out how she wasn’t making eye contact with us — how she kept crashing toy cars and knocking over block towers but couldn’t replicate a block tower herself. How she knew all of her shapes, colors and every picture on every flash card but couldn’t respond appropriately to simple directions. How she repeated phrases over and over again to communicate but couldn’t answer a yes-or-no question. She couldn’t hold a back-and-forth conversation. She never asked questions. She never used pronouns. She flapped her hands and walks and runs haphazardly.
What bothered me the most about this diagnosis was not the 15 hours a week of early intervention therapy, having to fill out the mountains of paperwork to enroll her and begin her IEP for school, meeting with liaisons and case workers, or even that we didn’t know what the future might hold for her. It was that suddenly the very things I loved about my daughter, all the things I felt made her unique and beautiful, were now “symptoms” of a “disorder.”
The pediatrician wasn’t seeing her how I did. He didn’t see that, although she didn’t or couldn’t replicate his three-block structure, she can build whole Lego cities more intricate and creative than anything I would think to build, and certainly more creative than anything pictured in the directions.
He didn’t see that although she became easily frustrated, she is so spirited in a way I never was. I’ve always reveled in how she is so unlike myself. I was so shy and had trouble making friends when I was younger.
She might not say “Hi” and properly introduce herself to other children or ask them their names, but the doctor couldn’t see the pure joy on her face when she runs up to them and tries to make their acquaintance non-verbally by hopping up and down and smiling and squealing 2 inches from their faces. I love that she sees the world in her own way and seems oblivious to the fact that she operates on a different wavelength than all the other kids around her. Some kids seem to fear her, some watch her as if they think she is a curiosity and others are game to join her.
He didn’t see that although she doesn’t make eye contact with us very much, when her eyes do find mine, her whole face lights up and she laughs like it is the funniest thing in the whole world. He didn’t see how she grabs my face, brings my face to hers and squeals as if she’s bringing me into her world with her two tiny hands.
I fought mentally against my daughter’s autism spectrum disorder diagnosis because I hated the idea of stifling her uniqueness with labels. It wasn’t until three days after the visit to the pediatrician — when we were in the line at Michaels craft store and I was trying to pick up the materials for her tutu skirt for her 3rd birthday party — that I began to understand why we needed this diagnosis. In the checkout line, she became lost in yet another meltdown, seemingly out of nowhere, and I had to hold her in my arms while she kicked and hit me and tried to throw herself on the ground. I couldn’t console her and I couldn’t calm her down so I had to wait patiently for the moment to pass, while on the inside I was panicking. I was fighting back tears, while I felt everyone’s eyes, from the cashiers to the other people in line, staring and whispering.
It’s taken me a long time to get to where I am in accepting the initial diagnosis, and I know we still have a long road ahead, both in learning how to be her best advocate and in navigating this new world post-diagnosis. I still find myself constantly analyzing her behavior.
The more I analyze, the more I am finding I don’t really care anymore. The diagnosis is important because it ensures we will learn how to give her the tools to be successful so she can carve out the life she wants for herself, just like any other parent with a child on or off the spectrum. And although I have no idea what the future will bring, I do know that she will have the life she wants for herself, whatever life that will look like. Because she is more than the sum of her “symptoms,” and no diagnosis will change her or define her.