No matter how hard you try to hide from them, your worst fears will eventually find you. Mine found me in what someone I know calls “the good part of the paper”: the part of the Sunday Washington Post containing sales flyers, the comics, and the Sunday magazine.
There between the ads for Best Buy, Target and Wal-Mart, the cover of Parade magazine read “Autism’s Lost Generation.” The cover story was about Dana Eisman, a 20-year-old from Potomac, Maryland, who, like many of her peers, “rocks out to Train, adores Glee, and eats pizza every week.”
Where Dana differs from her peers is that she is autistic, which makes the future for her and her parents a very scary place. Dana will soon, in special-education parlance, “age out,” i.e., she will turn 21. The services that made life doable for her and for her parents will, for the most part, then cease.
Instead, she and her family will be expected to make their own way with little assistance. This is why Dana’s mom, Beth, says that “I want to celebrate . . . but what I feel is a knife in my heart.”
Robin Heyd of New Jersey, whose son is also about to “age out,” described the “knife” perfectly: “You’re devastated twice: first, with the diagnosis; then, years later, when you realize that after all the interventions, you still have a kid with autism and you have to plan his future.”
It’s a “knife” I know well. (Actually, my preferred metaphor is that of a sword, as in Luke 2: “And a sword will pierce your own soul too.”) My son, David, is graduating from high school this June. (He has never watched Glee. I’m not sure he knows what it is. His musical tastes run more to Amy Lee and Evanescence: A few years ago, he listened to “My Immortal” about seven or eight times in a row, and then said, “I’m depressed!” I laughed and replied, “No wonder.”) Two years after that, he, too, will “age out.”
While people around me talk about their kids’ triumphs -- admissions to prestigious colleges, sports accomplishments, their precocity, even their marriages -- my thoughts about my son’s future revolves around living long enough to be able to take care of him.
Recently, his mom and I went through the process of setting up a guardianship for David. Like most procedural matters connected with taking care of kids like David, it was unintentionally traumatic. You justify taking away his rights and his autonomy by rehearsing everything he cannot be entrusted to do for himself. In other words, you relive the worst day of your life.
(Mind you, in many ways, David is fortunate: He is relatively high-functioning and if, God forbid, something were to happen to Debbie and/or me, he would be provided for financially.)
Reliving that day is an inescapable part of getting your child the help he or she needs. And it gets worse as they get older. “In the next 15 years, an estimated 500,000 autistic children . . . will graduate out of school systems in the U.S. and into the unknown. Meaningful programs for them are scarce, and funding even scarcer.”
“Only 20 percent” of those who age out are employed and 60 percent of the tiny minority who are employed are “underemployed” or paid “below-market wages,” often “working for a company in isolation, doing piecework like shredding paper.”
This is the “knife” embedded in the hearts of a half-million parents. In an effort to make sure that the Danas among us get the help they need some help, they beat on every door they learn about and often find themselves moving from one state to another in search of that help.
These folks don’t want your admiration and they sure as you-know-what don’t want your pity. What they want is to live in a society where doing the right thing -- upholding the values that so many of their neighbors profess, in particular, Christians -- doesn’t require heroic virtue, at least not all of the time.
And that’s the kind of society they live in. Barring major change in the way people like Dana are provided for, there are two likely outcomes: the more likely and less-bad is that the vast majority of them slip through the cracks. They don’t receive the help they need, their families burn themselves out trying to care for them, and, eventually, many of them are institutionalized.
Mind you, that's the less-bad outcome. The worse outcome is that if and when it becomes possible to identify people at risk for autism in utero, they, like children with Down Syndrome before them, will be “targeted for elimination.” If this happens, it won’t be because people have a "defective worldview," at least not entirely. It will be because the prospect of raising a child with these kinds of needs with little or no help for most of his and your life, only to have him institutionalized after you’re gone, would scare the you-know-what out of anyone.
I doubt that such a genetic test will ever come about, but the point remains: creating a society that honors the sanctity and dignity of human life costs money. It can’t be done on the cheap and it requires a collective commitment.
To be clear, by “collective,” I mean government. There are volunteers doing wonderful things to help people like Dana and their families, but calling it a “drop in the bucket” not only would involve invoking a cliché, it would also exaggerate the impact.
Expecting the private-sector and voluntarism fairies to build a society worthy of being called “pro-life,” at least in this case, is as realistic as the Japanese counting on the various Kami to repair the damage done by the earthquake and tsunami. In the words of Jiminy Cricket, “it’s a lovely thought but not at all practical.”
How you pay for this society is an obvious question, one whose answer is inseparable from the answer to another question: What kind of society do we really want, as opposed to imagining ourselves, to be? As I have said elsewhere, part of the answer lies in understanding the difference between being a good society and a messianic nation.
Whatever we decide, people like the Eismans will keep on loving their kids and doing all they possibly can for them. They understand something most people don’t: the truly lost generation isn’t the one whose members “rock out to Train, adore Glee and eat pizza every week.”