It’s every parent’s worst nightmare. You turn your back for a second, and when you look around again, your child is gone. Although this could happen to any parent, it’s happening to parents of children with autism spectrum disorders at an alarming rate, according to a new study.

(Katherine Frey/The Washington Post)

“This was the first study to quantify the problem of autism wandering,” said Alison Singer, president of the Autism Science Foundation in New York, which helped fund the study. “Up until this study, we had a lot of anecdotal information, but it’s hard to effect public policy changes with anecdotes. You need data. So we put together a study to determine the size and scope of this problem, and it’s actually much bigger than we expected.”

Singer, whose daughter Jodie, 15, wandered when she was younger, said this study is the first step toward more policies to support parents, caregivers and law enforcement personnel in dealing with wandering.

“I feel like we’re, as a research community, really behind,” said Paul Law, director of IAN. “It’s convicting that we took so long to address what is likely one of the leading causes of death and morbidity in autism.”

After the study, a new medical diagnosis code was put in place to cover autism and wandering, Singer said. Among other things, this allows pediatricians to spend part of regular appointments discussing wandering with parents and pointing them toward resources that might help them if their child wanders.

Still on Singer’s wish list is a national Autism Alert system for when a child goes missing (these children are not covered by the Amber Alert system because that requires that a child be abducted) and insurance coverage for tracking or locating devices, should parents want to use them.

“There’s a large population of children with autism who need the same protection as senior citizens with Alzheimer’s,” Singer said. “Sometimes it’s the difference between life and death and if you can’t [get a tracking device because you can’t] afford it and your insurance won’t pay for it that’s wrong. The safety of your child should not be dependent upon your income.”
IAN’s study compared the frequency of wandering in kids with autism with that of their typically developing siblings. Between ages 4 and 7, the study found, 76 percent of children with autism had wandered at some point, four times the number of typically developing siblings. For ages 8 to 11, 27 percent of children with autism wandered, compared with 1 percent of their typical siblings.

Singer said these statistics show that wandering in children with autism is not a symptom of bad parenting.

“So many families were afraid or embarrassed to report [their child wandering] because of concerns that this would hearken back to bad parenting,” Singer said. “That’s why we compared their rate of wandering to their unaffected siblings. If you’re a bad parent, the wandering should stretch across the children, and that’s not what we saw.”

Children with autism wander for a variety of reasons, Law said. Some, because of difficulties with social and communication skills, might not realize they are doing something dangerous. Others are driven to get to something they are interested in. Still others might be experiencing sensory overload in a noisy, bright or crowded place, and trying to escape.

Understanding why the child is wandering is key to preventing the behavior, said Lori McIlwain, executive director of the National Autism Association. McIlwain’s son Connor, now 12, once left a school playground and wandered toward a highway to see exit signs, which interest him.

“At home we have a strong system for monitoring him,” McIlwain said in an e-mail. “I never stray too far from the doors and he’s always where I can see or hear him. We have alarms on our doors, and stop signs adhered to each door. Our doors and windows remain locked. When everyone else is airing out their homes in the springtime, we stay locked up.”

She emphasizes that first responders should always check water first when searching for a child with autism, because so many are drawn to the water. According to the IAN study, 24 percent of the missing children had close calls with drowning. Swimming lessons for children with autism can also help.

Autism advocates hope that the study will raise awareness and lead to more resources to combat a behavior that is not only dangerous for the child, but extremely stressful for families.

“When you talk to families, most of their concerns come around the fact that they can never take their eyes off their kids,” said Jim Ball, chairman of the Board of Directors for the Autism Society. “That stressor is huge to families.”

McIlwain agrees.

“It is our greatest fear that we’ll leave this Earth and our child will wander away from a facility and die alone,” she wrote.

For information on how to prevent wandering or tool kits for caregivers and first responders, visit the the Web site for AWAARE, the Autism Wandering Initiative.