If you had told me four months ago that I would be writing today about how my daughter has autism, I would have said that couldn’t be true. I didn’t see it four months ago.
I still didn’t see it when her developmental pediatrician pointed out the signs as he wrote in his book and watched her play. When he ended his interview with how he felt certain that my daughter was on the spectrum, I felt myself become numb and suddenly all the sound went 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 cars and knocking over block towers, but couldn’t replicate a simple 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 in order to communicate, but couldn’t answer a yes or no question with “yes.” She couldn’t hold a back and forth conversation. She never asked questions. She never used pronouns. She flaps 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 in order to enroll her and begin her IEP for school, meeting with liaison 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 that I felt made her unique and beautiful — were now symptoms of a disorder.
He wasn’t seeing her the way I did. He didn’t see that although she didn’t or couldn’t replicate his three-block structure, she can build whole Duplo cities more intricate and creative than anything I would think to build and certainly more creative than anything that was pictured in the directions.
He didn’t see that although she became easily frustrated, she was so spirited in a way I never was. I’ve always reveled in how she is so unlike me. I was so shy and had trouble making friends when I was younger. Although she doesn’t say, “Hi” and properly introduce herself to other children or ask them their names, the doctor couldn’t see the pure joy on her face when she would run up to them and try to make their acquaintance non-verbally by hopping up and down and smiling and squealing two inches from their face. I love that she lives in her own world 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, while others are game to join her.
He didn’t see that although she barely made eye contact with us, 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 doesn’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 her ASD diagnosis because I hated the very idea of stifling her uniqueness with labels. It wasn’t until three days later when we were in the line at Michael’s craft store and I was trying to pick up the materials for her tutu skirt for her third birthday party that I began to understand why we needed this diagnosis. 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 — in learning both how to be her best advocate and navigating this new world post-diagnosis. I still find myself constantly analyzing her behavior and questioning how much of it is normal quirky toddler development and how much is her autism.
The more I analyze, the more I find that I don’t really care anymore. The diagnosis is important because it ensures that we will learn how to give her the tools to be successful, so she can carve the life she wants for herself — just like any other parent with a child on or off the spectrum. 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.