Before I knew it was autism, I wondered what was wrong.
Why didn’t you look at me when I said your name? Could you hear? Did you understand what I was saying to you? Is this something you’ll outgrow? As a speech-language pathologist, did I just “know too much” and read into things more than I should have?
Before I knew it was autism, I worried about you.
Why didn’t you babble like babies are supposed to do? Why weren’t you talking? Would things get better? Would you be OK?
Before I knew it was autism, I was scared.
What is wrong with my baby? Why does everything seem to be so hard? Would things just click for you one day, or would everything always be a struggle? Would you ever learn new things? Could you learn?
Before I knew it was autism, I questioned myself.
Did I do something wrong to cause your delays? Was this all my fault? What was I missing? Clearly, it was me, and I needed to do more to help you. What did you need? Why wasn’t I enough?
Before I knew it was autism, I wondered if it was autism.
Were you on the spectrum? I hoped and prayed not—this was my greatest fear. Autism was the one thing I just knew I could not handle. Surely it was just a delay . . . no, you had sensory issues . . . maybe it was just sensory processing disorder . . . but what if it is autism? No, it couldn’t be . . . but what if it is?
Before I knew it was autism, I thought I could fix everything.
I knew you needed more than you were getting. I quit my job to stay home with you. If we just worked hard enough, you would make improvements . . . we could do this . . . you would be OK. I tried—but I wasn’t enough.
Before I knew it was autism, the unknown was eating away at me.
My worries and fears for your future were almost debilitating. Occasionally, the worry would build up inside me and explode into a near panic-state. What is wrong with my baby? What is it? Why is this happening? Why? Why? WHY?!
Then the tears would come. I’d cry because I was scared. I’d cry because I was sad. I would cry because I just didn’t have answers.
Before I officially knew it was autism . . . I knew it was autism.
I knew. I felt it deep down before I was really able to admit out loud. I knew you needed an official diagnosis in order to get the help you needed. So, it was official: my 3-year-old son was diagnosed with autism spectrum disorder (ASD).
Once I knew it was autism, I cried.
My worst fear for you, for our family . . . it had happened. I had the official scores to prove it, and those scores hurt my heart in a way I couldn’t explain. Autism was real and it was going to be a part of our lives forever. What would that mean for you? For your future? For your brother’s future and our future as your parents? Could I do this? Would I be enough for you?
Once I knew it was autism, I was relieved.
Knowing . . . just the knowing of it made it easier. I had an answer. A cause. A reason. An explanation. A justification. A why. A diagnosis. Having a diagnosis—an answer—led to a plan. Steps I could put into action to finally get you what you needed.
Now that I know it’s autism, I still worry. I worry about how the world will treat you. I worry about people misunderstanding you and mistreating you. I worry about the day I’m no longer here to take care of you.
Now that I know it’s autism, I still question things. Am I doing enough to help you? Am I giving you everything you need to be the best version of yourself? Am I giving you everything you need to live a happy life? Am I doing enough to change the world, to teach them about autism, to show everyone just how amazing and wonderful you truly are? As your mother, am I giving it my all to create the world I so badly want you to live in? One where people appreciate your differences, understand and accept you, support you, and celebrate your victories?
Now that I know it’s autism, I also know a lot of other things.
I know an autism diagnosis isn’t the end of the world like I once thought it would be. It was merely the official start of a new journey, a fork in the road where we took the path less traveled. This is not the life I planned, but it’s still a life I’m proud of and excited to live with you.
I know that autism isn’t scary. Are there unknowns? Yes. Are those unknowns frightening? Absolutely. But you are amazing. You and your autism don’t scare me one bit.
You and your brother are the best things in my life, and I love you for all that you are and all that you ever will be.
I know I’m willing to fight for you. I’ll step up, be that mom, and make others uncomfortable if I have to. I’ve learned I don’t have to do it all or be enough by myself. I know you have the best tribe on your side, and we are all in this together.
I know an autism diagnosis didn’t change you. You are smart, silly, sweet, and lovable. You are still the same perfect little boy you’ve always been—a diagnosis didn’t change that one bit. Did I plan to have a child with autism? No, but I read this quote today and it spoke to me:
“It’s a funny thing, how much time we spend planning our lives. We so convince ourselves of what we want to do, that sometimes we don’t see what we’re meant to do,” Susan Gregg Gilmore, Looking for Salvation at the Dairy Queen
Before I knew it was autism, so many questions, unknowns, and fears filled my thoughts—all with one main concern, would you be OK?
Now I know it’s autism, and guess what? You’re OK. We are all OK. I know that now.