Diagnosed with Ava- Our Autism Journey

“In that moment my world changed… in the best way possible…”

“It’s a girl!” Beautiful words spoken from a lady I had never met before, who just happened to be rolling a device on my tummy coated in thick gooey gel.  Floods of images come to mind. Pretty frilly dresses, hair bows, dance recitals, first boyfriends, prom, graduation, etc… All of the wonderful experiences we will have with this precious little girl! I felt on top of the world. I couldn’t wait for all those things… I imagined the mother-daughter bond we would have. We would be best friends forever. She would of course also be a daddy’s girl spoiled rotten with never-ending kisses and hugs.  It would be magical… all of it!

Finally after much waiting, the day was here. 12 hours of labor, 30 minutes of pushing and one episode of “Wheel of Fortune” later, she was born into this world, our angel, our perfect princess, our little Ava. Let the fun begin!

We noticed that she progressed in areas early on, holding her own head up without support at just a month or two and standing up at 5 months old.  So it was little surprise that by the time Ava reached 9 months, she was walking on her own and seemed to really have a grasp on her surroundings. I always beamed at how quickly she developed and was one proud mama to say the least! Ava was always intent on getting what she wanted. She is, after all, a girl that knows what she wants and focuses in on it. She does usually always get her way out of life. I never worried that she would hold herself back.

The summer that Ava turned 2 years old was when I really started to notice things were a little different with my child compared to others her age. She had major separation anxiety. She would carry bags of little random objects and line them up around the house. She couldn’t stand it when we touched her hair. Loud noises upset her. The children at her daycare would tell us that she was a crybaby and wouldn’t talk to them. Mostly she kept to herself. We spoke to friends, family and other parents who assured us that she was normal that all kids do this. So why did my motherly instincts tell me differently?

By age 3, I think we had been told by so many people not to worry that we were flat out in denial. I would notice other children speaking in sentences and playing with other children. Ava shied away from other children. She had a vocabulary of 10 words. She threw terrible tantrums. We couldn’t go out in public without having to return home carrying a kicking, screaming child under our arms. People stared. We could read their thoughts… “What is wrong with that child?”. Or sometimes the old,”What is wrong with those parents?” We got the pity looks… a lot. It was then that we asked our family pediatrician for some help. Not only was he supportive and knowledgeable when it came to caring for Ava, he was able to point us in the right direction to some avenues to help us figure out the wacky wonderful mind of our first born child. We had her assessed by behavior specialists, started her in speech therapy, occupational therapy and early learning school.

Then, shortly after her 4th birthday, a friend was visiting us from Iceland. “Your daughter has autism, you know….” I didn’t need to ask our friend how she knew. Her daughter, now 18 years old has autism. Her stories about her own daughter hit very close to home. In fact, there were so many similarities in behavior that I, at some moments, thought she was talking about Ava. And yet, she had only just met my daughter.  I knew in my heart that her words were true. And one week later, it was confirmed by a doctor.

I can’t say at first that I didn’t cry. All of those things that I wanted for my little girl seemed so far away. I knew that she would face tough battles in her life. Would she get teased at school? Would she fall behind in her studies? Would she have a normal           childhood/experiences like other kids? My heart ached. I wanted to protect her from the unknown. Little did I know, in that moment my world changed… in the best way possible.

After the initial shock passed, I found I was more at peace. I finally had an answer to so many questions. I had been so focused on the idea of my child being “typical” for so many years that I wasn’t listening when she reached out to me. She had been telling me all along who she is. Her behavior issues that I had attributed to her being stubborn were out of frustration when she didn’t understand me or vice versa. I realized also, that her diagnosis of autism did not change anything except my understanding of how to help her overcome her struggles. It did not change my little princess or how much I loved her. It isn’t some “disease” that will ruin lives.  It’s actually a really beautiful thing and I wouldn’t change a thing about her. She has taught me more about life in her 5 years on this earth, than I could have learned in a lifetime. She will grow up to be exactly who she is supposed to be. So my daughter has autism. It doesn’t define her as a person but is a part of who she is.  So, I like to refer to our family as being diagnosed with Ava- our spunky, affectionate masterpiece of a little girl, who also happens to be autistic. Since that day, I am able to be a better mom and give her what she needs like she has always done for me. Because I know how to help her now. There is no more second guessing or frustration. Ava is my hero, in more ways than one.

What I would tell other parents out there who might have concerns about their child… Trust your parental instincts! You know your child better than anyone else! Don’t wait to get help. Our pediatrician was amazingly supportive- take advantage of the help when it is being offered to you. The more help you can give your child at a young age, the better their chances are at success. I want people to realize, like I did, that autism is not a sickness. There is no need for pity looks when someone tells you their child is autistic.  It just means that they see the world differently, perhaps more beautifully than others. They learn differently, sometimes better and sometimes not. In a world where everyone is “unique”, a child with autism is truly that. We should all be so lucky not to be the same as everyone else.

-Elise Thorsson

A note from ACP: Elise is one of our very own ACP peeps. She has worked for Alaska Center for Pediatrics since 2012. We are very fortunate and grateful to be able to share her family's story.