Cobilynn Dickinson lives with fear every day.
Her son has autism, and he's a runner who doesn't always respond to his name. So the Utah mother bolts the door as soon as her family enters the house, or she has a sibling stand guard when she's unloading groceries. She recently installed an alarm system to alert her when doors are opened.
"For the last three years, I haven't left his side," she says of her 4-year-old, Hagen. "When he gets out, he just runs. He can be anywhere and he won't answer you."
A new study published Monday in the journal Pediatrics shows such behavior is a common, and dangerous, problem: In an online survey of parents of 1,200 children with autism, half said their child had attempted to wander off after age 4, when most children have outgrown the typical toddler behavior.
And while the children who ran away did so because they enjoyed running or exploring, or were trying to avoid a situation that made them anxious, many could have been seriously hurt. A quarter could have drowned and more than half could have been injured in traffic.
More findings from the study, conducted by the Interactive Autism Network at Kennedy Krieger Institute in Maryland:
Children who wandered off had more severe autism, with lower intellectual and communication skills. They commonly left their home, stores or schools.
Among the children who wandered, 1 in 4 were missing long enough to cause concern.
Police were called
Wandering attempts peaked at age 5.
Many families lose sleep or give up activities outside the home because of a child's tendency to wander.
Advice for families
Autism spectrum disorders are characterized by a lack of communication and social skills. The disorder means children don't realize they should let their parents know where they're going, and it makes it difficult for them to return after they wander, says Utah pediatrician Paul Carbone, who treats children with autism and has a 9-year-old son on the spectrum.
He co-edited a new American Academy of Pediatrics' book, Autism Spectrum Disorders: What Every Parent Needs to Know, which includes information on wandering. He advises parents to lock doors and windows, fence their yards, and put up small stop signs to prompt wanderers to stay home.
Swimming lessons can help children stay safe if they do escape, he adds. He also suggests using wearable identification, because many children with autism don't like to wear IDs they can feel. There are tags for shoes and pant loops and even codes that can be ironed on clothes.
The new resource guide covers the gamut of autism topics, including warning signs, therapies and alternative medicine. While some children, whose autism is severe and who have other intellectual disabilities, may always be dependent, other children with autism thrive, Carbone said.
"We think the newest generation of children with autism really face a better future than past generations," he said. With proper support, "The sky can be the limit for these kids."
Dickinson enrolled her son in the Carmen B. Pingree Center for Children with Autism in Salt Lake City, where he's learning to stay close by holding hands, to walk when he's outside and to stop. "It's just a matter of time and constant teaching for him to understand what we mean," she said.
Mirella Petersen credits two years of behavioral therapy, which taught her now 5-year-old son, Jaden, about boundaries and safety, for halting his wandering. Once, he got past her lock-up devices and was found at 5 a.m. delivering water to the homes of neighborhood kids, giving each their favorite color of cup.
"All of us have had our children run away at some point," said Petersen, president of the Utah Autism Coalition.
Monday's study shows behavioral therapy can help, but it called for further research on interventions. It also showed that wandering children were often content.
Utah mom Kendria Adams called police when her daughter disappeared at age 4. She was found down the street at a stranger's house. She had walked inside, gone upstairs and started playing.
"Julia didn't seem to be bothered by it one bit," said Adams. "That's what's hard about it. If another typical child was lost they would be distraught. They would start crying."
Adams recommends parents pass out fliers to neighbors to alert them what to do if they see their wandering child - that's what helped them find Julia that winter. "Knowing your neighbors and your community can be a huge benefit to the well-being of your family and your peace of mind," she said.