Rolling Stone Magazine - Luke's Best Chance: One Man's Fight for His Autistic Son
Luke's Best Chance: One Man's Fight for His Autistic Son
More than a million children in America are the autism spectrum. What happens when they come of age?
By Paul Solotaroff
July 27, 2016
Luke greets me in the hallway, thrusting a book in my direction, then snatches it back and darts into his room. It's been two weeks since I've seen him, and what I desperately want to do is grab him up and hug him till he howls. But because it's been two weeks – and because he is autistic – I must begin again, from the start line, with my son.
His bedroom, per usual, is a hot mess. The floor is a Slip 'N Slide of books he's pulled down, most of them in greasy tatters. Clifford's First School Day; Clifford and the Big Storm – whatever that brave dog is put through by his author is nothing compared with the carnage he suffers at the hands of this rabid boy. The huge stuffed Clifford my fiancée bought for Luke is splayed on his back, paws up; he is draped in laundry that appears to have been folded by someone without patience – or fingers.
Washing his own clothes, then putting them in drawers, are among the "goals" set forth for him by the ever-changing staff at the residential school he now inhabits. But in the two years since he left the separate dwellings of his divorced parents and moved to an institution on Long Island, he has taken just the most incremental steps on the path to self-maintenance. At 17, he still requires someone to bathe him and wipe up after he toilets; to cut his food into chewable pieces and see that he eats with a fork, not his fingers; and to hold him with two hands while crossing the street on outings to the movies or museums. Luke is as much a threat now to dash into traffic as he was as a headstrong child back in grade school. But he's grown half a foot since we moved him here and checks in at almost five-nine; anyone daft enough to restrain him one-handed is playing with kitchen matches at Fukushima.
His back to me, Luke hands up Clifford's Family with a one-word injunction: Veed! (Translation: Read till I say stop.) This is step one in the wooing I must do to get back in his better graces. Anytime my job takes me away for a stretch, I pay for it in his baleful disregard. Since the time he was six, he has come to know his father as a man who loves him and leaves him. There was no way to explain then why I had to move out when his mother and I split in 2005, both of us pushed to the breaking point by his 2 a.m. wake-ups and the constant siege of crises he presented. No one can prepare you for the fatigue of a first child. But when that child gags constantly on fistfuls of food; when his eyes roll back in a vacant haze that will belatedly be treated as seizures; and when, for the umpteenth time, he breaks a new DVD player the instant you look away – well, that isn't fatigue, it's slow death. As much as I craved our tactile closeness – the softness of his cheeks when I pelted him with kisses; his post-bath scent while we snuggled, watching Elmo – it was do-or-die for me by the time I left. At great personal cost, I saved my own neck, and lost some part of him that I'll never quite recover.
I sit and read to Luke now in the semidark, going slowly so he can pipe in words he knows. They often keep the blinds drawn in this newly built complex, though my ex-wife Elaine and I have urged the staff to raise them every morning. We also ask repeatedly why these kids are stuck indoors on a crisp, dazzling day in early spring. "There's a farm down the block," says Elaine, "where he could learn to plant seeds and water crops." Maybe that would happen if the school could retain its workers, but in a high-stress job, dependent on Medicaid funding, the turnover here is constant. This is hard on the managers, who must constantly find replacements, but harder by far on the children who live here and keep trying to trust adults who disappear.
Meanwhile, Clifford's working his juju on Luke. As I read, he bounces on his bed for joy. Snatching the book away, he hands me another – then, two pages in, yet another. This is my boy: an ebullient toddler who's three months shy of voting age. With his energy and sweetness, he charms everyone who meets him, then drives them up a wall with his global needs.
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Those who don't know any families living with adult autism might find it incredibly sad and even horrifying. Those who do live with autism day-to-day will see options they may have never dreamed possible. This author presented some serious hope for families who need it.
Unlike disease or an illness, there is no treatment and there is no cure - because autism is not an illness or a disease. It is neurological wiring. Children with autism have support and resources, but once they age out -- noting that nothing has changed for them physically or mentally -- they are on their own. I liken it to the so called pro-life crowd who are adamantly pro life - right up until birth.
Adult autistics have an 85% unemployment rate, and don't even get me started on the underemployment of the 15 who have found work. Aging out turns many into invisibles. In school, there is socialization, learning - and general "things to do" to keep the mind and body firing on all cylinders. Once people age out (as the author noted), many regress due to the lack of structure and social interaction. It is an incredibly lonely and debilitating life.
This article made my heart skip a beat a few times while reading it because it showcased something that is working, that is HELPING. If the early indications pan out -- they have found a way to dramatically improve quality of life AND (!!!!) at a fraction of the cost (because as we all know, thats the bottom line for getting anything approved these days).
So yes - I read this and I rejoice.
