By: Susan Hyman, MD, FAAP & Lori McIlwain
Anyone who's been a parent long enough has felt that panic—often only temporary—when a child wanders out of sight. Kids can get lost anywhere—at an amusement park, in a store, in a crowd, and sometimes even right in your own neighborhood. Many parents of children with
autism spectrum disorder (ASD) know this feeling all too well.
The Scope of the Problem:
study to quantify the scope of the problem was published in
Pediatrics in 2012. Results were significant. Of the 1,218 children with ASD who were studied, almost half of those children had wandered off from home, school, or another safe place at least once after age 4. Many were missing long enough to cause concern, were in danger of drowning, or were at risk of being hurt by traffic.
What Parents Can Do:
There are things parents can do to protect their children with ASD from this very real and scary danger.
Here are tips from the American Academy of Pediatrics:
Know wandering triggers. Children with ASD can be impulsive and typically wander or bolt from a safe setting to get to something of interest, such as water, the park, or train tracks—or to get away from a situation they find stressful or frightening, such as one with loud noises, commotion, or bright lights.
Secure your home—regardless of your child's age. Shut and lock doors that lead outside. Consider putting alarms on doors to alert you if a door has been opened.
Work on communication and behavior strategies. Teaching your child strategies to self-calm when stressed and appropriately respond to "no" can make a big difference. Make sure your child's teachers and other family members understand how important it is to keep your child engaged and busy to reduce his or her urge or opportunity to wander.
Set expectations. Before going out in a public place, communicate the plan with your child and other family members—including the timeline and rules to follow. Consider noise-canceling headphones if noise is a trigger, and use the "tag team" approach to make certain your child is always supervised by a trusted adult.
Consider monitoring technology and identification. More than 1/3 of children with ASD who wander are never or rarely able to communicate their name, address, or phone number. It may be helpful to have things like GPS devices, medical alert tags, and even their name marked in clothing.
Project Lifesaver and
SafetyNet Tracking or other programs may be available through your local law enforcement agencies.
Rest. Children with ASD may be less hyperactive and less likely to wander during the night if they have a sleep management plan and a
regular sleep schedule. Caregivers who get enough sleep are also more vigilant. Many children with ASD may have sleep problems. If your child is having problems going to sleep or staying asleep, talk to your pediatrician for further evaluation and treatment.
Worried about Wandering?
Talk with your child's pediatrician about creating a
family wandering emergency plan. The diagnostic code for wandering is Z91.83, which can be used in your visits with medical professionals. Your pediatrician can give you additional strategies that may be helpful in increasing your child's safety, as well as information about local resources.
Editor's note: Wandering behavior isn't unique to children with ASD. A variety of different developmental disorders, such as
attention-deficit hyperactivity disorder (ADHD), can also lead to children running off at any given moment. In addition, children with ASD may have other medical problems that may need further evaluation and treatment. These may include seizures, problems with sleep, gastrointestinal problems (feeding problems, abdominal pain, constipation, diarrhea, and behavioral health problems (such as anxiety, ADHD, irritability, and aggression).
Additional Information & Resources:
About Dr. Hyman:
Susan Hyman, MD, FAAP is Associate Professor at the Department of Pediatrics at Golisano Children's Hospital at the University of Rochester Medical Center. She is board-certified by the American Board of Pediatrics in Developmental-Behavioral and Neurodevelopmental Disabilities. Within the American Academy of Pediatrics, Dr. Hyman is a member of the Council on Children with Disabilities Executive Committee, the Section on Developmental & Behavioral Pediatrics, and the Section on Integrative Medicine. As former Chair of the AAP Autism Subcommittee, Dr. Hyman led in the revision of the AAP publication,
Autism: Caring for Children with Autism Spectrum Disorders: A Resource Toolkit for Clinicians, 2nd Edition.
About Ms. McIlwain:
Lori McIlwain is the mother of a teenage son with autism spectrum disorder and co-founder of the National Autism Association. In 2007, she began advocating for federal resources to reduce and eliminate injuries and deaths associated with autism-related wandering. She has been a contributor in
The New York Times, and featured in
Education Week, FBI's
National Academy Associate Magazine, and NPR. In 2012, Ms. McIlwain assisted the National Center for Missing & Exploited Children in creating
federal search and rescue guidelines for missing children with special needs, and in 2017 she presented on the topic of wandering among children with autism spectrum disorder at the federal
Interagency Autism Coordinating Committee.