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Autism awareness: Advocates warn about danger of children wandering off

Autism expert on why it's so complex

On World Autism Awareness Day, April 2, advocates are calling attention to some lesser-known aspects of the disorder, including the risk of children wandering off and ending up in harm's way. Autism affects an estimated 1 in 59 children in the United States and is characterized by a range of symptoms that can vary widely.

Autism spectrum disorder affects the nervous system, with common symptoms including difficulty with communication and social interactions, obsessive interests, and repetitive behaviors. It is diagnosed based on a set of criteria outlined in the Diagnostic and Statistical Manual, or DSM, a guidebook for doctors. 

But Dr. Theresa Hamlin, associate executive director of The Center for Discovery, says those symptoms just skim the surface of the impact autism can have on a child and family.

"The problem is autism is a highly complex disorder," she told CBS News. "The DSM really doesn't do it justice in terms of all the other problems, especially the biomedical problems, which are often not addressed. Kids have sleep disorders, gastrointestinal problems, and seizure disorders. All of these things go on and make autism so complex and really difficult to treat."

The Center for Discovery is a research and specialty center in New York state that offers residential, medical, clinical and special education programs. One area the group is studying is how to prevent a child with autism from wandering off — a problem experts call elopement (though it has nothing to do with getting married).

The issue made headlines and struck fear in the hearts of parents everywhere several years ago when Avonte Aquendo, a teenager with autism, was found dead after wandering away from his public school in New York City.

According to the Centers for Disease Control and Prevention, surveys of parents show that about half of children with autism were reported to wander. Of those, about 1 in 4 were missing long enough to cause concern. The most common dangers to children in such situations include traffic accidents and drowning. Children wandered most often from their home or another home, and from stores and schools.

"We're looking at what are those behaviors that can result in death and certainly elopement is one of them," Hamlin said. "Typically, when you read the [medical] literature, what it says is that kids like to run away from things or they're trying to avoid something and you have to have safety plans in place."

She said the Center's research shows other factors may also be at play.

"There may be other correlations such as severe gastrointestinal issues," Hamlin said. "When kids are constipated, which is often the case in autism, if they haven't gone to the bathroom for several days, they're more likely to run away during those days than when they've just had a bowel movement. So we need to understand more and those are things you can treat."

In order to prevent children with autism from wandering off and potentially putting their safety at risk, the CDC recommends that parents, teachers and caregivers:

  • Have an emergency plan in place and alert neighbors and school workers.
  • Watch the child's behaviors and notice signs that the child may wander off before it happens — for example, if the child makes a certain sound or looks toward the door.
  • Keep identification on the child, such as an ID bracelet or information card, and keep all information about the child up to date.
  • Secure homes, including fences and doors, with locks.
  • Teach safety skills to the child, including responding to safety commands like "stop;" how to state his/her name and phone number; and how to cross the street and swim.