What I Wish the Old Me Knew About Autism


If I could go back to the day my son was diagnosed with autism spectrum disorder, I would have told myself to invest in Clorox stocks. Haha! One of his stims leaves everything quite messy. But, in all seriousness, I would tell myself, “This is going to hurt. Just accept your beautiful children and get them some therapy outside of school for troublesome issues. It gets easier. Hang on.”

We were stuck in a small town. My then-husband worked at a small rural telephone company. I’d heard of autism; I’d volunteered as a teacher’s aide in the special ed classroom in my high school in 1992. And what I knew of it was terrifying. One young man in my class scooted everywhere. He was capable of walking, but the teachers wouldn’t dare set him off by insisting he do anything he didn’t want to do. I remember my first day watching him and his interactions with those around him. I was told, “Don’t look him in the eye or he’ll attack you!” And I thought to myself, “What is he, a lion? A Rottweiler? There has to be something better than this self-contained building with teachers doing little more than babysitting for these kids.” I’m so glad about how far education systems have come since then, but there’s still a long way to go for many.

Now, I was the one with a child with autism. And I struggled — not because I wanted perfection, but because I wanted understanding. How did it happen? How do I help him do better? What will happen to his baby sister in regards to him? I read everything the Internet and library had to offer on the subject. I spent hours I could have been playing with my kids, trying to find a “cure.”

I went to my doctor for help for myself as I plunged into a deep pit of hopeless depression. He told me, and I quote, “Well just expect that he’ll never love you, and he’ll most likely end up in an institution.” That didn’t help. Thankfully, I already knew the first part was a lie.

I eventually got both of my kids in with the area’s leading doctors. They told me to start with a gluten free/Casein free diet. But they didn’t tell me how to go about this, and I totally botched it. To this day my son doesn’t trust anything I cook. He went from not eating for a week at a time, to only eating white/beige foods that were bought at a fast food restaurant. I’m still trying to regain his trust.

But what I’ve learned along the way has been most important to me.  I’ve learned to appreciate differences. I’ve become way less shallow and self-righteous. My faith has been built up exponentially. My sense of humor has become a little bit off, but I love it. I’ve learned to rejoice in all victories, big and small — they’re really worth it. I’ve learned that one common thread can stitch together an entire tapestry of people from different backgrounds, incomes and beliefs and meld us all into a beautiful masterpiece.

Much love to you all in the beginning dregs of this journey. May you have the faith to see it through, and the sense to enjoy the little surprises along the way.

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The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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