Researchers at the Children’s Institute, a not-for-profit organization affiliated with the University of Rochester, NY, studied the connection between autism and the hemorrhage of cash a family endures when one of their own has the condition. “It’s a disorder that seems to have an impact on the entire family,” reads the press release accompanying the study, from 2008. “A new study finds the average household with children with autism not only spends thousands of dollars more in expenses, but also makes less money overall.”
My 15-year-old son Alex has done his part to make sure the situation has grown only worse in the past five years. First he wanted an iPad. My wife Jill bought his first-generation beater ($190 on eBay) for him months ago, and was smart enough to also spring for a thick black plastic shield (a “Defender,” $30 then and still about that on ebay). It keeps the iPad screen off our hardwood when Alex drops the iPad screen-down with a smack.
“Alex, don’t drop that!”
Finally the iPad meets our hardwood enough to put a mountain range of hairline cracks across the screen. He brings it to me. “iPad!” he proclaims. The screen is black. “Alex, what do you want me to do?”
Slide to Power Off the thing reads. Jill taught me to press the Power button and the button on the side of the iPad simultaneously until the screen goes black in these moments of parenthood and the apple appears in the center of the black screen.
I press two more buttons, resuscitating the thing yet again, and hand it back to Alex. He goes away to punch buttons.
I don’t feel great about shelving my son to technology in tough moments – no one who works with children with autism should ever believe that parents feel good about that – but you must understand that I got a job six weeks ago.
I’m 51 and I got a job! I was laid off four years ago and I got a job at a cool Times Square startup suddenly making more than less overall. I look out my office window and not 50 yards away sits the ball they drop on New Year’s Eve. The ball. Cool.
I work on the first day Alex is home from camp, the first of some 14 days he’ll have home between the end of his 10 days of summer camp and the faraway beginning of school. We arrange for a neighbor to watch Alex during this period that Jill said over and over would “work out.”
Jill emails on the first day. “Alex + uncharged iPad + our neighbor sort of MIA. Please. DO NOT be in a bad mood this evening. This is really shaping out to be a sucky day.”
I warned Jill about this weeks ago after my first interview. Our neighbor doesn’t feel well. And I’m supposed to do … what? On lunch hour I weave my way through the tourists up Broadway to Forever 21 to buy leggings for Alex. Alex calls them “Pajamas! Pajamas!” They’re girls’ tights for dance class, really, and normally they’re two for $10. They are two for $7.50 this week. Wow.
Alex rips both pair in less than a week (…thousands of dollars more in expenses…) looking down when he’s bored and setting his fingers to work. Then from where he sits comes a sound like skin peeling after a sunburn and I see a rope of legging dangling from his hand.
Why does he do this? “Must be something to do with sensation through his fingertips,” his teacher said once.
Because both Jill and I work now, we’re running low on paper towels, which we run through when Alex misses the toilet and makes a mess on the bathroom floor in the morning. They’re at Costco, $18 for a bundle of 12 rolls. When I was unemployed (…thousands of dollars…) I used to wheel the rolls home by foot with our cart. Now I snap to Jill about delivery or having someone deliver paper towels.
Eating costs a lot. “Many children on the spectrum have difficulties with eating a limited diet,” reads the Eating Problems primer of National Autism Resources (www.nationalautismresources.com/autism-eating-problems.html). “Reasons for children’s eating problems may range from a need for food to look a certain way, to avoiding certain textures of foods.”
I guess Alex read that, because he used to like McDonald’s nuggets, about $8 in Manhattan when you get them with the meal. Now he likes Popeye’s 3-Piece Tender Combo, $6.39. For years it was hot dogs at dinner, Hebrew Nationals, $4.50 for a pack of seven. Think of all the sodium, we used to think before he stopped eating anything at all except Chee-tos, Chips Ahoy and Utz Dark Specials.
“One especially helpful feeding therapy is food chaining,” Eating Problems continues. “Food chaining has been developed as a systematic method for the treatment of children with extreme food selectivity. Food chaining is an individualized, non-threatening, home-based feeding program designed to expand food repertoire by emphasizing similar features between accepted and targeted food items.”
These days Alex’s food chaining involves drinking a glass or two of chocolate milk a day (Ovaltine: $4.99 for a 12-ounce tub) and munching Chips Ahoy (Original, about $5, but $3 on sale). His Special pretzels run $3.50, but almost every store sells for them for $2.99 though the corner of the bag still says $3.50. Isn’t that strange?
“Pretzels!” he says. “Cook-EEs!” He’s nibbled blueberries, watermelon and, most recently, fried breaded eggplant. He used to like but has kicked chocolate, bacon and yogurt. Food for him is cheaper, overall, than a steak dinner. I’ll give $500 to the first person who gets him to eat a steak dinner.
“Cheos,” Alex says. “Char-oos.”
“Chee-” I say slowly.
“Cheah-”
“Chee-TOs!” $2.78 to $3.18, depending on the sales. “Cheer-AHs!” Alex says. “Alex,” I reply, “we don’t have any right now. We’ll buy you some tomorrow.”
What kid, neurotypical or otherwise, doesn’t want Chee-tos or an iPad? Alex doesn’t ask for expensive, trendy jeans or the hottest and latest sneakers. He doesn’t care if people care about how he looks. On the books, he should be cheaper that a typically developing kid. Even the four-digit lawyers’ fees we’ve forked over to get Alex into a “residential program,” round-the-clock education we believe is his last best shot at any kind of productive adulthood, might also hit parents trying to get their typically developing child into a private school or college.
A study in the Archives of Pediatric Medicine estimates the lifetime cost of an individual’s autism at $3.2 million, taking into account what Jill and I shell out plus the costs “to society in general.” The latter includes, among other things, that Alex will likely never support himself as an adult. A society that chooses to call itself compassionate will have to keep him alive and reasonably happy for a long time.
The extra cost of autism involves neither dollar signs nor decimal points. It involves the anxiety that my wife Jill and I live with – the unknown future for Alex when we are no longer around to provide the intensive care and love that he so desperately needs.
Jeff Stimpson’s books are “Alex the Boy: Episodes From a Family’s Life With Autism” and “Alex: The Fathering of a Preemie.” Visit his blog is at www.jeffslife.tripod.com/alextheboy.
