Living with Autism

A friend posted on Facebook a story about the TV show Parenthood, which I gather is about parenting an autistic kid.

I'm don't know what kind of autistic kid, but of course I related it to my own story. My older son has Asperger Syndrome, or "high functioning autism." What does that mean?

It seems to mean he's more sensitive to peoples' expressions. He can't watch people's faces and pay attention at the same time. Or, he couldn't when younger- he seems to now be able to fairly well. The best explanation I've heard is that expressiveness is so stimulating to him that he had to turn away. It was distracting.

Another explanation is possible, that when his brain processes peoples' expressions, it devotes so much energy to it that there's not enough left to pay attention to what they're saying.

And his emotions seem to be more powerful. In general, emotions tell us what's real. Danger isn't danger until we feel the fear. Love can be created at any minute, but we think it comes and goes because the feelings come and go. He has tons of fanciful dreams and speaks of them as real- stories of his life and the culture of other worlds and times. He knows they aren't true, but he feels them so deeply they're hard to deny. They captivate him, tickle his nervous system and overflow his cup with glee. And he's still managing to finish a degree in computer science...

As a kid, he often insisted on outlandish things. People said he was driven by a need for justice, albeit according to his own judge. Perhaps it was simply the most intense emotion for him, so it seemed true when he had to teach lessons to teacher upon teachers, showing them that the lesson was most important. And that truth was more important than threats, more important than a good grade, more important than fitting in. And he always honored truth, no matter in what tattered form it appeared in his juvenile or adolescent view.

Having stronger than normal emotions and not being able to see people's faces, he wasn't in touch with the heart of our culture. He seemed strange, off to himself, not connecting with the untruth of sarcasm or jokes. Jokes are funny mostly due to bursting out of our expectations, changing context so quickly that it tickles. It had it's costs, especially combined with my wife's sometimes blind adherence to her take on societal rules.

What scientists know for sure about Autism, low or high functioning, is that we know almost nothing about it. We don't know what autistic kids feel or what they think about life. We don't know what's important to them or what they want. What does someone with (not high functioning) autism want?

Of course we think we know, because we ask the question ourselves and our thoughts answer and we're touched which makes it true...

Maybe they want all sorts of stuff but, since they don't relate to people well, don't know they can ask. Maybe they think: "People are so weird, inventing all kinds of importance, then rushing around reacting to each other like crazy! What's with that?" So they think they can only ask us for simple things- a cup of water, a hug.

Maybe autistic people are sitting around thinking thoughts like: "Wouldn't it be great if we had world peace and devoted ourselves to all of humanity being safe, healthy and productive? Too bad most people are such social butterflies that they're consumed with looking good instead of contributing, feeling bad about themselves and being greedy. Maybe I can ask for some water and the person I ask can feel for a few seconds like he has a purpose."

Why do they have a show about raiaing an autistic kid?

We have autism in real life and it's sad. It's so hard for a parent to raise a child whose life and performance doesn't live up to MY expectations. It's hard to realize, day after day, how narrow my view of "living decently" is. We often said, "well, he's happy", but I'm pretty sure I was shaking my head a little the whole time.

Life was hard. My wife kept wanting him to live a "normal life", as if SHE knew what normal was. Both her parents were psychologists. Her mom is definitely Aspergers. She is, too, in my view. My point is, she hasn't a clue what "normal" is, though we both are sure we know. We certainly didn't know what normal was for kids with Aspergers...

In my wife's view, my parents and I seem to have Aspergers as well. She's right in some ways. We all have our weak areas, as well as strengths. My life is all too solitary and has usually been that way. Besides hiking with a friend once a week, I never spend time with friends... I almost never go to others' houses or have people over... Though many people seem to be similar to me, to some it could look like Aspergers.

So it's real, and it's great to see it on a show, to see the beauty of a human life, the little triumphs, the intense struggle and emotions. It's so much easier to appreciate the positive aspects without the long periods of bad feelings, troubled sleep, thoughts of what we did wrong, or thinking something's wrong with him, or with life. When I was raising an Aspergers kid, I was also worrying about my job, yearning for a more meaningful career and pretty much feeling that mostly I could look forward to another year of surviving. Feelings of despair and loss of dreams for a child are much easier to bear if we don't have to live through it slowly, painfully.

With TV, you can see and live seemingly all the poignant drama but without have to endure the weighty responsibility of making it all work out. The story tellers have done that for us.

Next: Many Lives through Stories