Nearly half of children with autism wander from safety

• Almost half of children with autism tried to wander after age 4
• Kids ages 4 to 7 with autism more likely to wander than siblings
• Of wanderers, 24% were in danger of drowning

The fear that overtakes a parent when a child wanders away from home or other safe place is easily compounded when that child has an autism-spectrum disorder. A new study shows that such behavior occurs more often than in other kids, and that the hazards can be significant.

In a sample of 1,200 children with autism, 49% had wandered, bolted or "eloped" at least once after age 4; 26% went missing long enough to cause their family concern. By comparison, only 13% of 1,076 siblings without autism had ever wandered off at or after age 4, developmentally the age when such behavior becomes less common, finds the study published today in Pediatrics. Among children with autism who went missing, 65% had close calls with traffic; 24% were in danger of drowning.

"Elopement is one of the very few problems in autism that is life-threatening," says pediatrician Paul Law, senior author of the study and director of the Interactive Autism Network (IAN) Project, a national autism database headquartered at the Kennedy Krieger Institute in Baltimore. "It is probably one of the leading, if not the leading, causes of death in children with autism," he says.

Although the design of the study didn't pick up deaths resulting from elopement, researchers did track media reports, says Law: "It's very predictable every few months that a child dies due to wandering, be it from drowning, a traffic accident, exposure or other events related to getting themselves into some unsafe place without supervision."

Among other study findings:

-- Elopement attempts peaked at age 5 for children with an autism-spectrum disorder.

-- From age 4 to 7, 46% of children with autism wandered away, four times the rate (11%) of siblings without autism. From age 8 to 11, 27% did; from age 12-17, 12% did.

-- Children who wandered had more severe autism symptoms and had lower intellectual and communications scores than those who did not.

-- The most common locations from which children bolted were their own home or another home (74%), stores (40%) and classroom or schools (29%).

The risks associated with her daughter's elopement behavior led Alison Singer of Scarsdale, N.Y., to install alarms on every door in her house. Between ages 5 and 10, Jodie (now 15) would try to leave the house in the middle of the night in search of things, from the Chinese restaurant that served her favorite egg rolls to a book she'd read at a neighbor's house two years ago.

"It just got into her head that she wanted it, and she'd head out to get it," says Singer, president of the Autism Science Foundation, one of several advocacy and research groups that funded the elopement study.

"It wouldn't occur to Jodie that the restaurant was closed, that it was the middle of the night, or that it was several miles away or across the highway," says Singer. She "doesn't have the cognitive capacity to think about those things."

Although wandering is a term commonly used for this behavioral condition, it's actually a misnomer, says Law, nothing that by definition wandering means going about aimlessly for no particular reason. People with autism who bolt "are intending to get away or intending to get to something," he says.

And the deficits that define autism — social, communication and behavioral — "set (children) up to put themselves in unsafe spaces" in spite of the diligent, often exhausting efforts families make to keep them out of harm, he adds.

Many in the autism community have long grappled individually with the challenge of elopement and keeping loved ones safe, says Cathy Pratt, director of the Indiana Resource Center for Autism at Indiana University. She was not involved in the new study.

"Alleviating this stress for families requires that physicians, family members, community members, autism professionals and first responders understand the problem and how to respond," she says. The study documents that elopement "has now become a community problem and a health concern."

Findings from the study were used by the Centers for Disease Control and Prevention, which recently created a medical diagnostic code for wandering as a condition of autism, an important first step in efforts to get preventative supports and services, says Singer.

Equally important is the movement to create an Autism Alert warning system similar to the Amber Alert used to warn of an abducted child, she says.

"When our children wander away, we can't issue an Amber Alert because technically they have not been abducted. This would help us mobilize resources when a child does wander."