Why I'm No Longer Using the Word Grief When I Talk About Autism

Ever have a life event that kind of smacks you upside the head and makes you realize you were really wrong about a certain way you viewed something? Two months ago I attended a wake for a child. I still think about that little girl and her family daily. The experience taught me in a way I didn’t expect about how I view autism.

I can no longer say I know grief. I do not. Not by a long shot. I know I have written about finding out your child’s autism is a grieving process. I know I’ve read similar posts talking about mourning the child you thought you had only to discover autism “took the life you thought you had away.” No it didn’t. Not at all. I know this because although my child is autistic, he is here. He is making a mess. He is playing with toys. He is singing the flipping “Bird Is the Word” song for the 739th time today.

He will need several prompts to finish chewing his food fully so he doesn’t gag. He will need reminding not to tease the dogs. He will be scared if he sees me so much as open the kitchen cabinet with the blender in it.

But he is here. I can laugh and sing with him. I can high-five him passing in the hall. I can sneak into his room at night after coming home from a funeral home and kiss the top of his head as he sleeps.

So yeah, life isn’t what I had planned, but no life is. Seriously, the life you see others living, the one you envy — even to them it’s not what they expected. Both good and bad. Maybe what I feel at times is self-pity, frustration or disappointment. Perhaps a grand combination of all of the above. For me, I know it is not grief. I choose not to use that word anymore in regards to autism and accepting my child’s diagnosis. It’s not a grieving process. It’s an acceptance process.

It’s an insult to compare it to losing a child — one I won’t do anymore. Or “mourning” because he is still here. Yes, it’s more work on my plate than I ever expected or even wanted. I’m grateful for it because some parents don’t have that luxury of complaining because they actually lost and buried a child. They are the ones who have the right to grieve, to mourn for a life they can no longer watch and help develop.

I’m not saying this anymore. I’m not asking or declaring you to do the same. All I ask you to do is hear me out. Is your child still here? Then you currently have more riches in your life than others do. I’m not telling you not to be sad or angry or frustrated with your situation. It would be utter madness for me to even suggest it. Hell, you don’t even have to like it sometimes. I just know what I felt when I hugged a mother recently who had been preparing herself to accept a lifetime of medical challenges for her daughter only to now greet us at her child’s wake at a funeral home.

I’m not declaring a right or wrong for anyone but me. Maybe you’ll agree or maybe you won’t. I just feel it’s important to acknowledge when I was wrong and how I plan to change it.

Follow this journey on Autism With a Side of Fries.

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