When I found out my third baby was going to be a girl, I was really excited. I had two boys already and was curious how adding a little girl into the mix was going to be. I thought, and hoped, maybe my girl won’t have as many challenges as my boys.
I had a really good pregnancy with Grace. They didn’t find any anomalies in the womb and she was born on my scheduled due date. Even after she was taken to the NICU immediately after birth for swallowing amniotic fluid, I still had hope.
But then Grace had swallowing issues. And later was diagnosed with a rare genetic mutation. She didn’t like loud noises and was very sensitive to touch. She had a lot of separation anxiety. She didn’t talk and was delayed in everything, exactly like her brother Nicholas.
However, there were also many differences. She eats applesauce and likes playing with food. She likes to play in water. She says a handful of words intentionally. She started walking on her own a little after she turned 2 years old. To me, the differences outweighed the similarities. I truly thought she was just delayed and possibly had anxiety.
Grace was diagnosed with autism spectrum disorder earlier this year at 2.5 years old. She was given a level 3 diagnosis. There are three levels: Level one requires support, level two requires substantial support, and level three requires very substantial support.
Nicholas was diagnosed at level 3 a few years ago, which we understood since he was a baby. It was clear Nicholas would need a lot of support. But we felt Grace was a little ahead of Nicholas. We were shocked that she’s level 3, which is the hardest part of her diagnosis.
That was our first mistake - comparing a boy with autism to a girl with autism. Comparing in general. Autism presents differently in girls. Sometimes girls are even misdiagnosed, because they don’t fit the stereotype, or mask it differently than boys. More than four boys for every one girl are diagnosed with autism.
I felt dumb for not seeing it. I now understand how autism presents differently in girls. It’s so different. I was sad for not knowing what was going with on with her. For assuming that she didn’t need as much help as I thought. And I felt really bad that I couldn’t give her the support this summer with therapy being over telehealth.
Telehealth hasn’t been working for Grace. She doesn’t like the phone or any kind of technology. We don’t get anything done. I have seen that regression because of COVID and from our therapists not being able to come into the home. That also has been really hard to watch.
The mom guilt came over me. Did I pay enough attention to her? Did I let her watch too much TV this summer? Did I play with her enough? We were home a lot this year, mostly just trying to survive the long days with each other during the pandemic. The signs were right in front of me, I was just oblivious.
During her evaluation I saw Grace line up toys for the very first time. I know kids with autism line up their toys a lot, but I had never seen her do it before. Or at least I thought I didn’t. I’ve seen things lined up in our house, but I always assumed it was Daniel. It just proved that I needed to give her more attention.
Some things I took away from the evaluation is that the levels of autism aren’t about “how much autism” the person has. That’s not a thing. But it’s about the amount of support they need to live their life. Another thing is a big part of autism is you can get very overwhelmed really easily. I thought she had anxiety by itself, but it can also be part of autism.
I’m hoping with this diagnosis, Grace will be able to get services weekly in the home. Our therapists started coming back to our house for the boys every week. But since Grace is still in Early Intervention until three years old, they can only see her twice a month in person. I want this for her because it’s definitely needed right now.
I know that this doesn’t change who Grace is. I understand that she didn’t just get autism this summer, she was conceived with it. It’s been with her for a long time. She’s still the sweet little girl I’ve always known her to be. I’m not sad that Grace has autism. I’m sad because I feel like I didn’t help her enough.
Nicholas and Daniel have been in school in person every day, so Grace and I are together for at least a few hours. She doesn’t have to share my attention with her brothers. I’ve been working with her and playing with her trying to teach her some things. She’s also going to her Toddler program again, which is going to be helpful. I’m happy I get some one-on-one time with Grace. I know this will help her development and our relationship.
Kate lives in Colorado with her husband and three children. You can read her writing at her blog This Special Journey where this post was originally shared.