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Alex the Boy from the publisher
Friday, 25 September 2009
Alex the Boy: Introduction Part 1
Topic: autism

There is no cure in this book. There is a lot of fear, and a lot of the life of my family seen through my eyes. There are few facts, but lots of predictions about autism and its future impact. There's no ending either, really, but that too is part of living with autism, which I have done since Alex was diagnosed about seven years ago.

The other night he turned to me out of nowhere and said, "Give me five!" and he held up his hand. His slap, palm to palm, was manly. Alex gets points lately for picking up stuff, like parts of the wooden train and his plastic letters. "Alex, time to pick up, clean up!" I'll drop a few toys into the bin to get him started, and he generally keeps at it until the stuff is off the floor and the bin sealed. He's doing this quicker and quicker - making it more infuriating to me when he stops, stares vacantly, and puts one of the toys in his mouth. He just stares out of the corner of his eyes, as if expecting the world to take pity. He climbs our living room furniture. He screeches. He kicks his little brother Ned. He bites Ned. On playgrounds, he's been known to drink from puddles when he isn't rooting in other people's carriages for bags of chips. Most people on the playground don't mind, but Jill tells me an old Chinese lady did yell at him the other day. "He didn't go back to her, either," Jill says. He usually gets down when I tell him to. The other night, during a screeching fit, I actually told him to "Shut up!" - that was, of course, worse than wrong; it was useless - and Jill produced a scented candle and said that one of Alex's teachers told her that smells can sometimes quiet a screeching autistic kid. It did quiet him, for a moment. Sometimes I look at Alex and my heart swells; sometimes it breaks. Most times, my heart is right in the middle.

Alex is ten years old and weighs fifty pounds. Ned is typically developing, seven years old, and weighs fifty pounds. I am 46, and sometimes I feel much older. Alex was born premature and spent the first year of his life in the hospital. So we had that, and for me the word "premature" was forever divorced from just some sexual meaning that men tried to never mention. (Researchers, who seem busy with autism these days, have said that low birth weight and preterm delivery may increase the likelihood of a child being autistic.) Alex weighed twenty-one ounces when he was born, so he's done pretty well, considering that his diet is still mostly hot dogs and crunchy crap, though recently he started eating watermelon and yogurt and bananas. I can't believe he eats bananas. Jill and I used to dream about him eating bananas. We consider bananas and watermelon real victories. We've never had what you'd call a conversation with him, so maybe, as lately we hear a few more complete sentences out of Alex, this victory is to come.

We fear for Alex as he grows up and maybe comes to depend too heavily on a system that was built when there was a lot more money around. It seems that all my life, money has been running out for just about everything but the storefronts of corporate retail. "Nourish your hopes," said Churchill, "but do not overlook realities." Honestly, is there a reason to suppose that a money shortage is going to abate just because Alex is closer to 21 years old than he used to be? To think that these might be the best days of Alex's life.

Autism is diagnosed in something like one of out of every 160 kids (the figures keep changing). I notice autism all around me. "E.T." looks autistic to me. He doesn't speak clearly or in complete sentences; he acts inappropriately, such as when he stuck his lighted fingertip out from underneath his Halloween ghost sheet to try to cure Elliott's older brother, who had a fake knife through his head. E.T. has to be protected from society by his friends and family, and a well-meaning medical profession did him no good at all.

Our cat Toast is also autistic. She seems unable to understand clear directions, such as "Get off the table!" or "Don't go in the bedroom!" She doesn't articulate needs and desires (I've always said that if only the language would emerge our whole picture of Toast would change.). She loves being brushed and has a limited diet. She's indifferent to social conventions and spellbound by simple things, like a peacock feather dragged under the bedspread. She doesn't know where she is in space, either, and often skids into walls or falls off the windowsill. Autism's all around, if you know what to look for.

Posted by Jeff Stimpson at 10:09 AM EDT
Updated: Friday, 25 September 2009 10:31 AM EDT

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