Living With Autism

Part of the problem with “disabilities” is that the word immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or can’t talk about their feelings? Or can’t manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the truly crippling disabilities.   Fred Rogers

Last year a friend asked me if it was hard, and how I manage, and if I ever just want to lose it. “It” being this whole raising a child with autism thing. Of course, it’s hard, and of course there are evenings when I collapse on the couch or cry in the bathroom. But isn’t that true for all mothers? How do I manage? About the same as all other moms, I guess. I drink coffee every morning and hide chocolate in the sock drawer. But then she asked another question…

“What’s the hardest part about raising a child with autism?”  Other people. When you’re dealing with an invisible special need, strangers don’t know about it. As much as I sometimes want to, we don’t pin a sign to my son’s shirt explaining his autism. So, other people, particularly strangers, give us a lot of attention in the form of staring, dirty looks, snide under-the-breath comments, and just overall judgment. I can feel it in the store when our son is getting upset and I struggle to calm him down. Or when he can’t sedately sit at a table in a restaurant. Or when he doesn’t respond when someone says hello.
But even the people who aren’t strangers can be hard. It’s not intentional, but unless they’ve had a lot of experience with autism, most people are largely uninformed. I get it, because up until six years ago, so were we! So, when my son laughs or screams at inappropriate times, or sniffs random items, it can be awkward. The look of shock can sting, and I remember again that this isn’t everyone’s normal.
These are all my issues, though. Because our son is largely unaware of these reactions, and most of the time they aren’t even directed at him. They’re directed at me. One evening my husband, John, looked at me and said, “I feel like people are thinking two things when we’re out as a family: your kid is bad, and you are bad parents.” That’s how it feels sometimes. It feels like people think we’re lazy, or I’m not doing my job well, and if I just tried harder he would behave differently.
But do you know what’s even worse?  When you realize your precious, funny, and brilliant little boy is being physically bullied because he hasn’t learned the skill of tattling yet. These are the things that make me sick to my stomach. Now that my son is growing older, the differences are more apparent. It’s a little harder to protect him from the bullies of the world. And that is now the hardest thing about autism — my inability to shield him forever from judgment, ridicule, and mean children and adults. When you realize people are going to stop sneering at you and start sneering at your child, it hurts deep down in a way that takes the breath out of your lungs.
And the thing that makes it even more mind-boggling is that he is the sweetest boy you could ever hope to meet. He cares deeply about other people. He is friendly and kind and has fun interests. Yes, he has some hurdles in life that other people don’t have. But he also has a lot of awesomeness that other people don’t have. It comes to him naturally.
So, are the endless sleepless nights rough? Yes. We’ve been working for nearly two years to get my son to move beyond his basic five or six foods. But those things don’t matter much. Those would be the hard parts if we lived in a world where I knew my son was unquestioningly accepted — and not just accepted, but celebrated for who he is. If we lived in a world where people didn’t pass judgment so easily and were quick to love all people regardless and because of their differences, and taught their children to do the same… then the hardest parts of autism would be much different. But we don’t live in that world. And as much as I want to keep him close by my side and never leaving the safety of our home, I know I can’t. He has far too much to offer (and teach) the world for me to do that. He has a joy and innocence and compassion and love and a curiosity that is infectious. The world needs him and more people like him.
by Lauren Casper
This post originally appeared on and Huffington Post.

Remember this Halloween, not every child has a "typical" reaction to Trick or Treating.

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