Our 19-year-old son, Daniel, is tall and handsome with a half smile like Popeye. When he flashes it, people fall in love. Their hearts break, too. Daniel suffers from Childhood Disintegrative Disorder, a rare form of late-onset autism. But autism all the same. He's one of the many victims of this current, devastating epidemic. And his story is both eerily familiar yet puzzlingly unusual in its specifics. This is not news. If autists were all the same, autism might be easier to cure.
My husband and I used to be foreign correspondents and so it made sense that at the age of three Daniel, born in Mexico City and then transplanted with us 18 months later to Asia, spoke English in a "communicative, appropriate" fashion, along with some Spanish, Cantonese and Tagalog. But by three and a half he had lost all his language. He has barely spoken a word since.
Perhaps not the worst thing in the world.
Except that Dan was never able to replace speech with any other form of communication, although we have tried, and are still trying, many methods. Combine this with the fact that we believe he has retained or re-discovered much of the basic intelligence he had as a toddler, and then gained some and you have a recipe for some dreadful behaviors borne out of frustration. No, not all the time. If a joke is made in the kitchen - and our family does pride itself on sophisticated wit, some days we wonder if that is all we have left - and Dan is upstairs in a faraway room, we hear him laugh on cue. Often though, he has things he'd like to say, or worse, needs to say, and cannot chime in. Wildly angry, he tries to hurt himself or others. Or break something. Or he obsesses over ropes. And when it comes to "ropes," our Dan is not particular. Electrical wiring, garden hoses, window shade strings. They all are ropes.
It was for Dan that I watched The View Monday morning, which devoted an entire hour program to autism.
As the show began, I imagined what it would have been like if Dan and some of his compadres were on as well. Yes, they would all react differently. But at least one of them would scream because the lights made too much "noise." Another would run into the audience, perhaps out the door. Yet another would simply take off his clothes. And Dan? He'd probably dismantle a camera or two, his television career be damned.
So when Rosie began to bring out families and their kids with autism, one overriding thought ran though my head.
At least one of these kids, I said to myself, is going to make Danny DeVito look like a perfect angel.
But none of them did. They were, in fact, the best behaved autistic kids I have seen this side of a three-teachers-to-one-student-ratio-behavior-modification-geared classroom overflowing with gallons of Skiddles and other "rewards."
"Rosie," I said to the television set. "Did you glue those kids to their seats?"
She glared out, as she sometimes does. "Only kidding, Rosie," I said.
To be honest, some of them looked like what we in the autism community call "pretty involved," - a euphemism for the fact that they are, basically, screwed. None of them, though, were out there long enough to do anything really autistic.
This fall, taking a shortcut to relatives in New Jersey, we found ourselves in the midst of Harlem, when Dan began to scream. What could it be? Dan liked Harlem. He'd been there with his weekend aides. He went with Anthony, who is black and the shopkeepers treated him like part of the community. Then he went with Joe, who is white like Dan, and local teenagers suspected him of being a young cop of the most infuriating variety.
The kind who won't speak to you.
Far as we can tell, Dan kind of liked this subterfuge.
Well, to make a long story short, Dan was screaming on our car ride to New Jersey because he had to go to the bathroom. And when we didn't stop, he did what any profoundly autistic teenager worth his diagnosis would. He went in the car.
And so my husband and I found ourselves on an empty neighborhood street, albeit one with a dumpster (my husband is a Pulitzer Prize-winning former investigative editor; he can find anything) changing Dan into the extra outfit we always bring along. There we were: two middle aged white people, with a naked 200-pound young white man on an empty street in Harlem. You'd think we'd attract some attention, even if it was only from one of those mythical cops Dan so enjoyed impersonating. Well, finally, one did drive by. He looked at us, sped up and drove away. As we wiped what we could and helped Dan on with new underpants, I waved nicely to the next one who passed, just in case an arrest was being belatedly contemplated. He at least rolled down his window. "Autism," I explained. "Toileting accident." And with that he slammed his window shut and sped away even faster than the first cop.
In a symbolic way that is what it felt like when I watched The View this morning. That Rosie was looking at the problem and then, speeding away from the real issues involved.
She didn't talk about the controversy over the causes of autism; a controversy that is so central to the notion of an epidemic and the hope for a cure. Is it the mercury in vaccines - not the vaccines themselves, that is not what anyone is saying - or some other environmental toxin?
She noted how expensive it is to raise a child with autism. But didn't say why. Not in any substantive way.
And by raise, did she mean "raise" or "educate?" Did she mean it costs school districts a lot of money because so many of them -- ignoring studies, anecdotal evidence and common sense -- spend a fortune busing their kids miles, even hours away, when they could be educating them for less money and with better efficiency in local schools.
Sometimes miles away means an institution. And institutions, whether they are good ones or not, cost a lot of money.
Or did Rosie mean it was expensive because autistic kids break a lot of things?
Or because they often need new mattresses?
Or because they throw things down the toilet?
Or because neither the school districts, nor the local or state or federal governments subsidize to enough of an extent what most parents really need to keep going: A meaningful rest on a regular basis and money to pay and keep the really good teachers and aides who work when the school day, or the school subsidies, run out.
Well Rosie did say she could do many more shows on autism.
I hope she does.
Meanwhile, I'd like to thank another writer and autism mom, Kim Stagliano, who started to bravely talk about bathroom issues here on the Huffington Post. She gave me the courage to do it some more
I'd also like to offer my apologies to Danny DeVito, for bringing him up merely for the sake of some merriment I couldn't resist. That's another way we autism mothers get through. With laughter.
I admire Danny DeVito greatly, even when he's had a few too many. And particularly when he's had them with George Clooney.
Our son Dan is in school now - the autism program at our local public high school -- even though it's 5 PM. At this hour he is learning to cook. Now that's a real program. If he was here, though, I could imagine reading the preceding paragraph to him. And then hearing him laugh.
Screaming a little, too, perhaps.