THURSDAY, March 24 (HealthDay News) -- Many parents know that heart-stopping feeling of being at the park or the mall, and suddenly losing track of their child. For the parents of autistic children, those concerns can be even more intense.
Though wandering is often associated with Alzheimer's, autism experts say a tendency to wander is an under-recognized, and harrowing, facet of the neurodevelopmental disorder.
Autistic children who've wandered off may not realize they're lost, so it never occurs to them to ask for help finding their way home, said Geraldine Dawson, chief science officer for Autism Speaks. Some may realize they're lost but won't -- or can't -- ask for help because of the speech and social difficulties that come with disorder. Others may even hide or run if approached by a police officer or someone else trying to help.
And while typical toddlers tend to grow out of wandering and learn that it's important to tell mom or dad where they're going, autistic children's wandering may persist into adulthood.
Carol Christiaanse, a mother of two from Westport, Conn., has been there. Her son, Matthew, is now 25 and has an autism spectrum disorder called "pervasive development disorder-not otherwise specified."
When Matthew was 4, Christiaanse and her family went to a fall festival at the local high school. She turned her back momentarily, and when she turned back, Matthew was gone. There were police at the festival, who said they'd make an announcement over the loudspeakers.
"They were trying to be helpful and they said, 'Don't worry. When he hears his name, he'll identify himself to someone'," Christiaanse recalled. "I said, 'No, he won't. He doesn't respond to his name.'"
A half hour later, a groundskeeper found Matthew headed down the road towards the neighboring town.
Another time, Christiaanse's daughter found Matthew walking down the yellow line in the middle of a twisty country road. Then there was the time Carol was taking a shower, came downstairs and found Matthew gone. She frantically searched the house, the yard and the neighborhood, and was getting ready to call the police when she saw her son walking down her street, a man driving slowly next to him in his car.
"The man knew something was wrong with Matthew, but he was too afraid of being considered a kidnapper to put him in his car and drive him home," she said.
Today, Matthew is 25 and living at a home with other adults with disabilities. One cold, rainy night, Matthew left the facility without telling anyone, planning to walk 12 miles to see his friend in another town. A police officer found him shivering on the steps of an office building, 3 miles from home.
"It scared me to death," Christiaanse said. "We feel lucky and blessed that he might have a guardian angel looking after him -- all of these things could have ended really disastrously."
Autism experts don't really know why people with autism have a tendency to wander. Christiaanse believes it's related to the problems in making social connections -- it simply doesn't occur to her son to let someone know that he's headed out.
Another characteristic of autism is having obsessive interests, Dawson said. "A child might have an obsession with street signs, so they'll leave home intending on going back to see a street sign that they saw earlier in the day," she explained.
And some cases have ended in tragedy. In July, Mason Medlam, a 5-year-old Kansas boy with autism, drowned in a pond near the family's home. The family knew the child wandered and had a fascination with water, his mother testified during a meeting of the Interagency Autism Coordinating Committee in October in Bethesda, Maryland.
"I was hyper-vigilant with him. I knew he had absolutely no concept of danger. I knew he was a runner, and I knew he would be attracted to the most awful of dangers if we didn't always know where he was," his mother, Sheila Medlam, said.
They had installed multiple locks on every door, and his mom slept next to Mason at night because she feared he would try to leave.
"I was terrified that he would wake up in the night and somehow find a way out of the house and be lost to me forever," she said. "I couldn't take him to a babysitter's house because there weren't any that had taken the precautions we had. How many child-care providers are willing to add multiple locks to their doors and take on such a risk as a child who wanders at the first opportunity?"
But their efforts weren't enough. One sweltering day, her son left through a window that was opened because the air-conditioning had broken. She found her son in the pond.
Sheila Medlam has started a foundation that supports a "Mason Alert," a program similar to the Amber Alert to immediately notify responders about missing persons who are prone to wandering, including information such as if they are verbal or nonverbal, how they respond under stress, the location of nearby hazards such as bodies or water or railroad tracks and the person's fascinations, which could offer clues about where they might be found.
As with every aspect of autism, there are degrees of wandering that vary from person to person. For some, like Matthew Christiaanse, it's an occasional, unexpected event, which makes it difficult to prepare or prevent it, his mother said.
For others, wandering or running off is a daily battle. Some distraught parents have resorted to putting locks on bedroom doors because their autistic child is intent on leaving, even in the middle of the night.
One solution is using GPS devices or tags, which are sometimes used for people with dementia, Dawson said. To enable families to get insurance coverage for such devices, Autism Speaks, the National Autism Association and other autism advocacy and awareness organizations are encouraging a change to the diagnostic codes used by doctors when they submit insurance claims to include "Autism-Spectrum Disorder-related wandering/elopement behavior." (Elopement in this context means unexpectedly running away.
The change to the diagnostic code would also help researchers in determining how prevalent the problem is. To that end, the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore is also launching a survey on wandering soon.
One thing that would help the families of autistic children is for friends and neighbors to understand the difficulties of keeping track of a child who wanders, Dawson said, while responders such as police need to understand that an autistic person may not respond to their name, or may run away if approached.
"If you were lost, you would be thinking, 'I'm lost, scared, hungry and tired. You hear somebody calling your name, and of course you're going to say 'I'm over here'," Christiaanse said. "But the autistic person? Not necessarily, even if they want to be found."
The National Autism Association has a safety toolkit on autism and wandering.
SOURCES: Geraldine Dawson, Ph.D., chief science officer, Autism Speaks, New York City; Carol Christiaanse, Westport, Conn.; Interagency Autism Coordinating Committee testimony, Oct. 22, 2010, Bethesda, Md.
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