My daughter, G., gets upset whenever she doesn't understand something. It never occurs to her that it does make sense and that she'll understand it someday. She just gets mad at the rest of us for being "so weird"; she's the standard edition. My son knows it's not the world that appears weird; his life is harder.
"Dealing with an autistic meltdown is like dealing with a tornado. Once you are close enough to see it coming, there's nothing to do but weather the storm. Unlike a child having a temper tantrum, Jacob doesn't care if his behavior is making me react. He doesn't make sure he's not hurting himself. He isn't doing it in order to get something. In fact, he's not in control of himself at all. And unlike when he was four or five, I am not big enough to control him anymore" (The words of "Emma" in Jodi Picoult's House Rules).
I've had psychologists tell me that if I keep a log of everything that happens (I think she actually said "everything you do") right before K. melts down, that I will be able to determine, and hence prevent, all of his triggers. Ha. I'd have to live beside his ear because a trigger could be a peer's taunting whisper. I'd have to be able to read his mind, because a trigger could be a thought--a misinterpretation of what's happening around him. Like when the teacher used reverse psychology: "Class, let's make a list all the things we could do to make this course as miserable as possible" and K. thought she actually meant to implement it!
I told my mom about K.'s rough week at school. He thrashes and throws, and when it's over, he doesn't remember what happened, and when you ask what upset him and why, he doesn't have a clue. "It's like a seizure." My mom said that's exactly what she thought about my brother when he was little. One minute he's kicking dust and punching walls, the next he's quietly pushing a truck back and forth or asking for a drink.
It used to freak me out, like don't you care about what you just put my through? Now that K.'s older and more socially aware, I know he does; I can see the remorse, the despair on his face when he realizes what he broke or who he's frightened.
The psychiatrist in House Rules explains, "Kids with Asperger's are very bright and verbal and crave social acceptance...they just don't know how to get it." That's what makes it harder: you want to fit in, but you know you can't, the pain of rejection makes you lose it, which makes you fit in less, which hurts all the more. And round and round we go. It's the anxiety and frustration of living with an autism disorder, more than the disorder itself, that causes the most pain. If the rest of us were autistic, or hey, even if we understood what that feels like, autism would be just a difference, rather than a disadvantage.
I don't know exactly what my kids need. I can make separate dishes without sauces or spices. I can buy them three pairs of the same pants because they are the only ones that "feel good." But I can't make the world seem less "weird." I can't predict every trigger or stop every tornado.
I can make home a safe shelter for tornado victims. That includes all of us.