The 3-year-old girl wandered away in mid-April from her grandmother’s home in Wareham, Mass. A frantic search began almost immediately, and within an hour little Alyvia Navarro was found unresponsive in a nearby pond. She was pronounced dead the next day.
A month later across the continent, a larger search unfolded over three days as hundreds of emergency workers and volunteers fanned out around Clearlake, Calif., looking for Mikaela Lynch, 9, after she vanished from her backyard. The outcome grimly echoed the Wareham search: A dive team found Mikaela’s body in a muddy creek.
The two girls were the first of at least 14 children with autism known to have died this year after slipping away from their caregivers. All but one drowned, evidence of a fascination that many autistic children have with water. The body of the latest victim, Anthony Kuznia, 11, was found Aug. 8 in the Red River after a 24-hour search near his home in East Grand Forks, Minn.
The tragic phenomenon goes by various names – wandering, elopement, bolting – and about half of autistic children are prone to it, a study published in 2012 in the journal Pediatrics reported.
That would be a huge number. The U.S. Centers for Disease Control and Prevention estimated in 2012 that 1 in 88 children are affected by autism. A federal survey this year pegged the prevalence rate at one of every 50 schoolchildren – more than 1 million children in all.
Wandering has led to the deaths of more than 60 children in the past four years, and the fear of it can make daily life a harrowing, never-let-your-guard-down challenge for parents.
“We take steps at home – locks on every door, gates, alarms,” said Jo Ashline of Orange, Calif., whose 11-year-old son has autism. “But there’s always, in the forefront of our minds, the thought that one tiny mistake could prove fatal.”
Groups that advocate for autism-affected families, including the National Autism Association and Autism Speaks, now are making it a priority to increase awareness of wandering among parents, professionals who deal with autistic children and emergency agencies that handle missing-children cases.
The Pediatrics study found that half of parents with autistic children never had received advice or guidance from a professional on how to cope with wandering.
Among those trying to change that is Sheila Medlam of Colwich, Kan., whose son, Mason, 5, drowned in a pond in July 2010 after squirming out of the family home through a window that had been raised about 8 inches because the air conditioner was out.
Medlam was at work; her adult daughter was at home but didn’t see Mason’s getaway.
“It only takes a second of inattention and they’re gone,” Medlam said in a telephone interview. “They’re fast, they’re quiet. They can disappear in an instant.”
Medlam now works with autistic children, operates a website that keeps track of wandering-related deaths and lobbies for a national alert system that would improve emergency responses.
On her website, she has written a wrenching account of the day Mason died – blaming herself for leaving the window open and for omitting potentially helpful details when she called 911. She also blames the first responders for lack of knowledge about how to search for autistic children.
“If only I could redo that day and just change one thing. But I can’t,” Medlam wrote. “All I can do is point out the mistakes I made, the mistakes others made, and the lack of resources that claimed my child’s life and ripped him from my arms forever.”
Boys and girls with autism aren’t the only children who stray from caregivers, of course, but their wanderings pose distinctive challenges.
While autism encompasses a spectrum of disorders, posing a range of developmental challenges, experts said the wanderers often are among the more severely affected. They often have minimal concept of danger, don’t readily absorb safety lessons and have limited ability to communicate with others.
Once on the loose, they also often make a beeline for a destination of interest that proves fatal: a busy highway or a body of water. About 90 percent of the wandering fatalities in recent years have been drownings, and most of the other victims were struck by cars, said Lori McIlwain, executive director of the National Autism Association.
McIlwain, who lives in Cary, said her son, Connor, wandered away from his school in 2007 and might well have ended up in danger had a concerned motorist not stopped and picked up the boy after getting no response to some questions.
In the ensuing years, McIlwain said, it’s been a constant challenge to teach her son how to keep himself safe.
Still, the fear that he’ll bolt remains “what we live with,” she said. “It doesn’t go away.”
Precautionary measures recommended by experts include locks and alarms on doors and windows, “Stop” signs placed in key locations in the home, and ID bracelets or tracking devices worn by the child.
Other recommendations from the National Autism Association include:
- Enrolling the children in swimming lessons, such as those offered by the YMCA for special-needs pupils.
- Developing a family emergency plan to be used in the event of a wandering incident.
- Informing local emergency services, trusted neighbors and staff at the child’s school or day care center about details of the child’s interests and wandering patterns.