Autism is Ruining My Life

I've never believed that my boys' autism was some kind of cosmic disaster. I don't think it is, and I've spent their lives trying to teach them that first, everyone has "stuff" to deal with, and that second, their particular set of challenges also comes with some advantages that we don't all have.

Joey, for example, has a gift for music that is rare and unique. It serves him well now that he's a member of the Lyceum Philharmonic Orchestra, and I think it brings him a great deal of personal satisfaction to boot.  Ben has an enviable memory, an acuity for understanding the inner workings of things, and a rare perspective on mortality that allows him to not get stuck in the moment-to-moment issues that arise.  I thought I'd done a pretty good job of helping them both feel confident in their strengths without getting mired down too much by their developmental, social, and emotional challenges.

And then as we were driving home from school yesterday, Ben uttered the sentence I never wanted to hear:  "Autism is ruining my life."

We recently "adopted" a foreign exchange student from Japan. He's living with us through the school year, and brings stories of exotic culture and food. Our oldest son Zach is currently serving a church mission in Japan, and our daughter is working towards leaving on a mission herself next summer to someplace that she hopes is more foreign and interesting than, say, Kansas.  Then again, it might be hard to be more strange than Kansas.

So Ben has been thinking about travel, and about doing something different and new. As we were driving, he asked me if I thought that when he turned 16 or 17, might he be able to be a foreign exchange student to another country, because he really wants to?

Honesty is the best policy, right?  I thought so when I replied, "Probably not, Ben. I think your autism would make it hard for you to go live in a different place, with food and customs you don't know, among strangers who don't know about some of the things you struggle with."

Cue the outburst:  Autism is ruining my life.

I went into my typical rhetoric about how his autism was a challenge sometimes, but that it was also a strength. I reminded him that we all have problems that we are working to overcome, and that his life didn't need to look like everyone else's life to be meaningful.

And then he told me that my problems weren't keeping me from living the life I wanted. He lamented that his admittedly deficit social skills prevented him from having friends, and his inability to adjust to change restricted his opportunities to try new things--to go out and embrace all the adventures that life has to offer.  I didn't know he was so self-aware. This is new.

And for the first time in 12 years, I really didn't know what to say.  He's absolutely right on all counts. Those are big problems, and he may or may not ever overcome them. My platitudes about universal struggle or compensating for the trials with an extra dose of strengths paled in comparison to the frustration and hurt that I heard in his voice as he expressed that it really wasn't fair that he couldn't be like "everyone else."

Most people see the world as their oyster, peeking open and offering untold treasures to whomever is willing to reach for them.  Yesterday I discovered that Ben's oyster is clamped tightly shut--at least, he feels like it is.

In some ways, I have to acknowledge that he's right, and that breaks my heart.  But I promise you this: we're going to use every knife, screwdriver, hammer, and explosive that we can lay our hands on to get Ben his pearl. If the world isn't opening to him as he wants, we'll open it for him.

Autism is not going to ruin his life.