MONDAY, Oct. 8, 2012 (HealthDay News) -- Nearly half of children with autism wander or "elope" from safety -- often to pursue a special interest or goal -- with more than half of those kids disappearing long enough to cause great concern about their well-being, new research suggests.
Researchers from the Interactive Autism Network, a project of the Kennedy Krieger Institute in Baltimore, found that close calls with traffic injuries were reported for 65 percent of the missing children and near-misses with drowning were reported in nearly a quarter of all cases.
"There's reason to believe that this is a leading cause of death in children with autism and possibly the leading cause of death," said senior study author and Interactive Autism Network director Dr. Paul Law. "Still, that's in some ways the tip of the iceberg, because most families are able to keep their children safe but have to modify their entire lives to do so. Families are often blamed for this and they're certainly not deserving of that because this is a very difficult problem."
Autism is a developmental disorder that affects a child's social interactions, language and behavior. Autism spectrum disorder is the umbrella term for a group of disorders with similar features, ranging from Asperger's syndrome at the mild end to full-blown autism.
The new study is scheduled to be published online Oct. 8 and in the November print issue of the journal Pediatrics.
Considered the most comprehensive estimate to date of the number of children with autism who wander, the study focused on more than 1,200 families of children with autism spectrum disorder and nearly 1,100 of their siblings without autism who were recruited through an online questionnaire.
The most common locations from which children eloped were their own home or another home (74 percent), stores (40 percent) and classrooms or schools (29 percent). From ages 4 to 7 years, 46 percent of autistic children had eloped -- four times the rate of their unaffected siblings.
"Children with autism often have a diminished sense of fear, so they can quickly get in harm's way," said Geraldine Dawson, chief science officer of Autism Speaks, a science and advocacy organization based in New York City. "As a clinician who has worked with families of children with autism, I can recall many instances when families were struggling to keep their children safe."
Parents of children with autism often use a variety of tools, including GPS tracking devices and special door and window locks, to keep their children from wandering, Law and Dawson noted. But a national alert program similar to Amber Alerts issued during suspected child abductions are needed for children with an autism spectrum disorder, Law said.
Of the parents surveyed, 56 percent reported elopement as one of the most stressful behaviors they coped with as caregivers of a child with an autism spectrum disorder, and half said they hadn't received any guidance from anyone on preventing or addressing the behavior. After children went missing, neighbors are most frequently contacted, followed by police, school officials and store personnel.
"It's important to have a strategy to recover the child as quickly as possible, because statistics are very clear that if a child is not recovered within 30 minutes to an hour, the chances of a bad outcome are much higher," Law said.
First responders such as police officers and firefighters also should be better educated about the issue and understand that they need to work closely with parents when developing a search plan taking into account a child's specific interests or behavior, Dawson said. Autistic children's wandering is typically goal-oriented, pursuing specific passions.
"Certain children, such as those who are fascinated by water, can be at higher risk for wandering and may need special supervision at school," Dawson said. "Tracking devices that are worn by the child are helpful and should be provided free of charge to families who need them."
The U.S. National Library of Medicine has more about autism.