This post might make me a total weirdo. I’ve never heard another autism parent express these feelings, so quite honestly, I might be entirely alone in this, but just on the off chance I’m not, here it goes…
Please stop sending me inspiring autism stories. I really don’t like it.
I know the people who do it mean well. They are trying to bring me hope – trying to encourage me that Luke may still be healed in this life, or I may find out he has some kind of hidden genius. So, if you have done this and are now feeling sorry, don’t feel bad. I get it. I still love you.
But you aren’t helping me. You are actually making it harder to get through my day.
At first I didn’t quite understand why it hurt to get these messages of inspiration. Was it just sour grapes? Was I jealous that this happened to someone else and not my son? Maybe in some small part, but I don’t think that’s the main reason. I am very happy for those families. So here it is, the top three reasons I don’t like getting inspiring autism stories:
1. It Makes Me Feel Like You Don’t Understand My Situation
Yes, there are kids that are healed from autism. Yes, there are kids that discover that they have amazing talents. My kid hasn’t, and if you know me and my kid at all, you know I have no reason to believe that is going to change this side of Glory. Back when he was two, I actually liked it, but he’s seven now and we are in a different place than we were then. When he was two, I hung on to those stories as beacons of where we might be in a few years. But at seven, it doesn’t seem that healing is God’s plan for us. So when you send me these things, I feel like you think it’s going to change, or that you think I can do something to make it change – and I can’t – not for lack of trying, either. And if you, my friend, don’t understand that, then it makes me feel very, very alone. Instead, love me and my child just as we are.
2. It Makes Me Struggle With Contentment
Most days I do pretty well with my lot in life, mostly because I don’t allow myself to compare my circumstances to others. I don’t allow myself to peek over the fence at the green grass that’s growing over there. I make a concentrated effort to NOT look at what other kids with autism can do and wonder why Luke still struggles with the most basic of concepts. Hearing these stories makes it that much harder to put on my tunnel-vision goggles and stay safely inside my contentment-bubble. These stories beckon me to wallow in self-pity and contemplate the perceived unfairness of it all, and that is not a God-honoring place. Instead, I need to be reminded that Luke is exactly who God created him to be.
3. It Makes Me Feel Like A Failure
I should have Luke in music lessons! Or art class! He should be making architectural masterpieces out of Legos by now! Maybe Luke does have a hidden genius. I don’t know. But these stories make me feel like it’s my responsibility to find it – like I need to sift through the literally millions of things that could potentially unlock Luke’s “inner giftedness” and expose him to the right stimuli to awaken it, and if I never find it, then I’ve failed my son.
It also makes me feel like you think I’m a failure – that you think that all kids with autism have a hidden genius (though evidence points that this is not the case), so if my kid isn’t progressing the way so and so’s kid is, then I must be doing something wrong. I must not have worked hard enough. I must not have tried enough different treatments. Somewhere along the way, I must have dropped the ball. Instead, I need you to remind me that God is in control, and that any progress he makes will be at God’s hand, not mine.
So my dear friends, I hope you understand now, if you didn’t before, that the best thing you can do for me is to help me stay in my little contentment-bubble. Help me know that you understand where I’m at. And if you are one of the parents, like me, who feel a painful twinge when someone sends you an inspiring autism story. You aren’t alone.