Ten years ago, the word “autism” was not in my personal dictionary. I rarely heard the word.
I didn’t know anyone who was on the spectrum, or even a friend of a friend. I couldn’t have told you what it meant or what the signs were, just that it was a word that seemed hidden or something to be ashamed of.
A word that you whisper quietly so only a few can hear.
A word that scared me because it was unknown and unfamiliar. I couldn’t have told you that autism would be in our future, and I certainly wouldn’t have believed you if you did.
Six years later, I heard the word “autism” again, this time from a dear friend in reference to my one-year-old son.
We were struggling. There were concerns and questions about his development and language. I was not ready to hear that anything was wrong with him or different about him.
And then she said the word “autism,” the word that scared me so much because I knew very little about it. I felt like she had punched me in the stomach. I didn’t want to be mad at her, but I was mad. I cried. I screamed. And she took the brunt of my pain.
She’s an amazing friend, one that knew what I needed to hear, whether I wanted to or not. I don’t know if I’ve ever told her what she did for me that day. She helped me start a long process within myself that was necessary for what was coming.
Acceptance.
Acceptance for an unknown world.
One year later, my Logan was diagnosed with severe non-verbal autism. That word again, this time attached with “severe” and “non-verbal.”
Three very difficult words to stomach at once.
But this time, these words brought me some relief, an answer to our questions about Logan.
It took a little while for the word “autism” to settle into our home. It took a little while for the dust to settle so I could see the world a little clearer.
It took a while for me to educate myself about an autism life and an autistic child.
It took a while for me to say the words “my son has autism” out loud for the world to hear.
It took a while for me to understand my son and his special needs.
It took a while for us to just plain be accepting of autism.
It wasn’t an easy transition for me, and I spent a lot of time in denial.
I share this because I wasn’t always okay with autism.
I share this because I was scared, sad, and overwhelmed by it.
I share this for the ones who weren’t okay at first and for the ones who need more time.
Finding Cooper’s Voice uses a beautiful word to describe autism: “Takiwātanga,” the Māori word for autism meaning “in one’s own time and place.”
The moment I heard it, I felt like the definition was also meant for the parents and caregivers of autism.
In my own time and place, I found autism to be so much more than the scary word I had thought it was.
In my own time and place, I stopped being angry at autism and started embracing it.
In my own time and place, I found a way to navigate the uncertainty and unknown.
In my own time and place, I found acceptance for autism, and then awareness for others.
Every story is not the same.
Every path walked in autism is different. It doesn’t matter how you get there, as long as you do. And then, share your story. Embrace this beautiful world.
Educate others and fight for inclusion. Be your child’s strongest advocate.
Share your story because it could help another family struggling with acceptance.
Share your story because if you can help even one family, it will be worth every second you gave.
Share your story so I can meet your beautiful family.
Written by Nikki at Big Little Logan
