Search This Blog

Monday, August 8, 2016

He's Not Sick, He's Not Cursed - He Has Autism

I have always maintained that my son is not in need of a cure for his autism.

Okay, I'll be honest. I haven't always maintained that. When David was first diagnosed, I was desperate for a "cure." This horrible, horrible disease was robbing my son of all he could truly be, keeping him from showing his authentic self. I was determined to search out every avenue, every study, every hint of a possibility of a way to get this autism stuff out of him.

I agonized over the fact that I took two acetaminophen for a bad headache once in my second trimester. I worried that the sunscreen I rubbed into his arms at the age of 8 months triggered something, because he licked it. His father didn't talk until the age of four - was that where he got autism? Every decision we made, every blip on our family tree had us playing the blame game.

After several months of miserable failures in diet restrictions, experimental behavioral therapies, and hair-tearing frustrations for both of us, I slowly came to realize what I know as a surety now:

David's autism is intrinsically a part of him, as much as his dark brown eyes, his sense of humor, and the birthmark under his left ear.

Sometimes people ask me if I ever think about what David would be like without autism. I answer truthfully - no, I don't. Not because it's heartbreaking or painful to think about it, but because I just can't imagine it. Autism may not be all he is, but it's a part of him that influences so much of who he's growing to be.

He doesn't need a cure. He needs therapies and work-arounds that help him navigate a world where most people don't think the way he does. Like a blind person needs a cane or a dog, like a dyslexic learns to decode the mix that their own brain throws at them when they look at a line of text, David can still live and love and work productively in this world, with some modifications and some more education of the rest of the general public.

It turns out there's plenty of science to back that up. Check out this article in the MIT Technology Review titled: Fixing Autism Research. The article discusses shifting the focus from "curing" autism to finding behavioral coping therapies. In their own words:

"If we accept that autistic people are neurologically different rather than sick, the research goal changes from finding a cure to helping us achieve our best quality of life."

The article goes on to stress the importance of dialogue between researchers and people on the spectrum, discussing their needs, listening to their suggestions, and finding ways to incorporate that into therapies and strategies that help them succeed.

My David doesn't want your pity. He wants to live a happy and productive life, just like you do. Let's put the research money into finding a way to give him - and all kids on the spectrum - exactly that.


Ellie's journey with her son David has been one of joy, patience and discovery - one that changed the very framework in which she used to view autism. Through David's eyes, she's learned that an autism diagnosis isn't the end of the world - it's just the beginning of an interesting new one.
Available at Amazon for Kindle.

No comments:

Post a Comment