When Patrick Murphy was 6, he became obsessed with vacuum cleaners. The boy, who has autism, used to slip out of his house near Buffalo without telling his parents, running to a nearby appliance store or into strangers' homes to marvel at vacuum cleaners.
Patrick is now 14, and his parents have double bolts on the doors in their home and brackets on their windows. Still, Patrick -- who is now focused on dogs -- manages to sneak out. Two weeks ago, he crept from the house after his mother went to bed. When his father came home, he alerted the police. They found Patrick running barefoot in his pajamas at 2 a.m., three miles from his home.
"That was very scary," said Patrick's father, Brian Murphy, who has now added an alarm system to the house to keep his son safe. "He has broken through brackets, windows, picked locks, you name it. It's absolutely the most stressful part of parenting a child with autism."
The behavior, called wandering or elopement, has led to numerous deaths in autistic children by drowning and in traffic accidents. Now a new study of more than 1,200 families with autistic children suggests wandering is alarmingly common. Nearly half of parents with an autistic child age 4 or older said their children had tried to leave a safe place at least once, the study reported. One in four said their children had disappeared long enough to cause concern. Many parents said their wandering children had narrowly escaped traffic accidents or had been in danger of drowning.
Those at greatest risk of wandering off were autistic children with severe intellectual deficits and those who do not respond to their names. The research was published on Monday in the journal Pediatrics.
"I knew this was a problem, but I didn't know just how significant a problem it was until I really began to look into it," said Dr. Paul A. Law, senior author of the study and director of the Interactive Autism Network, a registry that is a project of the Kennedy Krieger Institute in Baltimore. "This is probably one of the leading causes of death and morbidity for kids with autism."
Advocates for families affected by autism say the findings underscore the need to raise public awareness and alter policy. While Amber alerts are used to mobilize the public when a child is believed to have been abducted, for instance, generally they are not used when a disabled child goes missing, said Alison Singer, president and a founder of the Autism Science Foundation, one of the organizations that supported the study.
Emergency responders should receive special training on how to search for autistic children who are nonverbal and often scared by lights and sirens, she said. Emergency personnel also need to know to check streams or ponds, since many children with autism are drawn to bodies of water, as well as highways.
One in 88 children in the United States received a diagnosis of autism, Asperger syndrome or a related disorder in 2008, according to the Centers for Disease Control and Prevention. While some of these children are socially awkward but high functioning, others have limited intellectual and cognitive abilities.
"For children who are prone to wander, this is a pervasive problem that affects all aspects of families' lives," Dr. Law said. "Many parents just don't go out in public with their child because they don't feel safe with them, or they don't get any sleep at night because the child once escaped through the upstairs window."
The idea for the new study came from a family coping with autism, and it was financed by several advocacy organizations. Researchers surveyed families who had a child with autism or a related disorder between the ages of 4 and 17.
Most of the respondents came from 1,098 of Interactive Autism Network's most active participants, 60 percent of whom completed the survey. Families who chose to participate knew the survey was about wandering, and those coping with wandering children may have been more likely to respond, skewing the results, Dr. Law acknowledged.
Over all, 49 percent of families who participated said a child with autism had tried to wander from home, school or another safe place at least once after age 4; the peak age for wandering was 5. Some parents said their child wandered off several times a week or even several times a day.
"This is the first study to quantify the scope of the problem, and it was much larger than we thought," Ms. Singer said.
This article originally appeared in The New York Times.