Four months ago a 14-year-old boy with autism ran out an open door of his school in Queens, N.Y., and, to those who loved him, vanished.
Through the following weeks he became known to everyone else. Each morning I walked Ned to the train to send him to school and heard the subway loudspeaker:
“Police are looking for Avonte Oquendo. He is 14 and suffers from severe autism. He was last seen wearing jeans and a striped shirt…” Posters blossomed all over New York; Autism Speaks helped with a $70,000 reward. Police called the disappearance “distressing” and admitted that several officers were something that no police department likes to admit about its officers: emotionally involved.
“They found that kid,” Ned told me over the phone the other day. “They found Avonte. Pretty bummed about that.”
The medical examiner’s office confirmed on Jan. 21 that remains found along the East River matched Avonte’s DNA. He was last seen heading toward the East River 11 miles from where the body was found. Cause of death has yet to be determined.
Cause of death was a condition most don’t think is fatal.
“Forty-nine percent of all children with autism wander. One-third of them are non-verbal,” Michael Rosen, EVP of Autism Speaks said in local news reports, which added that Rosen’s 26-year-old son has autism.
“Nicky would end up across the street, on roofs of other houses when he was young,” Rosen said. “Eventually, we had to put locks on the top of every door in the house. And that’s how families with autism live. You can’t turn your back for one second.”
Alex, Ned’s older brother, hasn’t bolted in months, but he used to vanish frequently from our apartment with a slam of the front door. Soon the phone rang with a neighbor telling us Alex was inside his or her apartment, sometimes turning on every light.
“I’m so sorry. I hope he didn’t damage anything…”
“Well no. He just used my bathroom.”
Once on a Sunday morning he bolted from our apartment. I stuck my head into our building stairwell and listened under I heard an echoing slam and pounded to the steps. I found him three floors up. Through the open door of this lady’s apartment – she lived alone and expected guests for brunch – I heard her on her phone with the guard at our building’s front desk.
“Yes, can you help me? There’s a strange autistic boy in my apartment…”
“He’s my son,” I said to her, steering Alex out by his arm. “I’m so sorry.” No problem. Alex also said I’m sorry to me and to her, over and over. How did she know he was autistic?
He bolts outside, too: Once Alex got bear-hugged by a cop just a few feet from the cars in a busy intersection. Another time he bolted from a Central Park playground and turned up 10 blocks south in the zoo garage, bumming Fritos from the maintenance crew. In the depths of the bolting, I used to wonder if Alex would bolt out the front door of the building and run into Fifth Avenue.
Sometimes I tried to write thank-you notes to neighbors. “We’re sorry Alex intruded on you. We’ve talked to him about it, and it won’t happen again. Thank you for your understanding and kindness…” Usually I got about to “happen” before crumpling the paper. What difference was a note going to make to neighbor who knows who he is and says it’s okay if Alex busts in to use their bathroom? What on earth makes me think I won’t have another chance to write this note?
I’m not the only one wondering about wandering. Senator Charles Schumer has introduced legislation – “Avonte’s Law” – to provide tracking devices “and expand support services for families with children who have ASD or other developmental disorders in which ‘bolting’ from parents or caregivers is common.”
The law would also provide training and other resources to schools and local entities (see “police”) to help them “react to a situation similar to Avonte’s.” The tracking devices cost about $85 and a few dollars more a month to operate. The legislation would allocate $10 million for the program and interested parents could pick up the devices free. Schumer called it “a high-tech solution to an age-old problem.” I call it pennies for a miracle.
Many children with autism are drawn to bodies of water because they seem soothing, Rosen added in news reports.
We used to pile stuff in front of our front door before going to bed. A chair, on the chair an old coffee can that will fall with a waking racket if Alex moves it. Sometimes a second chair. We tried alarms; Alex used to watch as we stretched up to turn them on and off. In his early morning bolts, he’d shut our bedroom door first.
Yeah, we tried to have locks installed to keep someone inside. “You want it how?” the locksmith said. “I guess I could do it upside down so the bolt goes the other way …” He couldn’t – NYC fire regs forbid a key lock on the inside of an apartment.
Bolting’s numbers, according to AWAARE (Autism Wandering Awareness Alerts Response Education) and the National Autism Association:
· 74% of children with autism run or wander from their own home or from someone else’s home;
· 40% run or wander from stores;
· 29% run or wander from schools;
· Close calls with traffic injuries were reported for 65% of missing children;
· Close calls with drowning were reported for 24% of the missing children;
· 56% of parents reported running as one of the most stressful behaviors they have had to cope with as caregivers of a child with autism; and
· 50% of parents reported receiving little guidance on preventing or addressing this common behavior.
Make that 51% as Jill and I stood on the sidewalk outside the locksmith’s. “I feel like I’ll never sleep again,” she said. She did, of course, one day after bolting had drifted behind Alex on a float down a river only seems to understand. God knows I’ve never been able to predict what’s behind the next bend.
A boy gave his life to begin the war against bolting, a boy who will never understand what kind of hero he was. Hundreds attended his funeral. Distressed police now know a notch more about a population they can’t protect, a population born – as some races are born having to fight prejudice – with disadvantages we as a species can’t just enlighten ourselves out of.
Overnight the posters vanished. His family will sleep again, eventually, though never in the same way. Their alarms won’t go off and their doors won’t slam in the middle of the night. The lights of their neighbors will stay dark.
Yes, a long long time it’s been on Super Bowl night when I sit in a rocking chair in my father-in-law’s living room, watching the game for one of those infamous seconds as Jill appears in front of me says, “Jeff, Alex just left.” I shoot up to be sorry again. Pounding toward the back stairs I realize that at least tonight wherever Alex goes someone ran there before him.
Jeff Stimpson, 49, is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at http://jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, and The Autism Society news blog.