A Special Needs Guide to Wandering and Elopement
For most people, the word “elopement” conjures up the image of lovers running away to get married.
For the rest of us, it means something terrifying: a cherished family member with limited communication skills wandering or running away in unsafe circumstances. Because of the risk of injury or death from elopement, families must live in a constant state of alertness to keep their loved one safe from harm. I know because my child used to be a round-the-clock escape artist.
In spite of the danger, most therapists and medical professionals do not discuss the topic of wandering and elopement with families of at-risk patients. It is often difficult to identify the causes for the wandering behavior, and it’s even more difficult to provide a safe environment. So let’s explore the many causes of elopement and the real-life prevention strategies that families are using.
Medical and Behavioral Causes
Wandering often has a medical cause that may be treatable. Understanding the reason for the behavior is a good starting point for developing a prevention plan. Consider consulting with a neurologist or sleep specialist if you think there could be a medical cause for wandering behaviors. This is a partial list of conditions associated with wandering and elopement.
- Panic Disorder: a person may run without warning due to panic
- Sleep disorders such as REM Sleep Behavior Disorder may cause wandering while unconscious
- Disrupted sleep at night is directly correlated with daytime wandering
- Temporal lobe seizures are sometimes followed by a period of wandering in a state of clouded awareness
- Medication side effects
- Stroke or other brain injury
- Cognitive impairment
In 2011, the Interactive Autism Network published the first survey on the relationship between autism and elopement, finding that more than 40% of children with autism between the ages of 4 and 10 attempt to elope. The survey found several behavioral reasons for elopement:
- Enjoys running or exploring
- Trying to reach a preferred location (such as a park)
- Trying to escape an anxiety-provoking situation
- Pursuing a special interest (such as watching trains, elevators or sliding doors)
- Trying to escape unwanted sensory input (such as loud noise or bright lights)
Prevention of wandering involves both education and practical measures, but it is not humanly possible to prevent 100% of elopements. Different families will use different tools for prevention, depending on the cause for the behavior. For some, a doorknob safety cover and a deadbolt lock are enough to stop wandering; but in other cases, those measures are meaningless – my child figured out the safety cover on the first try before his first birthday, and he could unlock deadbolts as soon as he could reach them. Here is a summary of prevention methods used by my family and other families with whom I have spoken.
1. Direct supervision:
My definition of “direct supervision” is eyes or hands on the person at all times, or as the blogger Autism Daddy eloquently explains, to be on someone “LIKE WHITE ON RICE.” Elopement can happen in the blink of an eye. One time at the zoo I let go of my toddler’s hand to pull his snack out of my bag, and when I looked up less than 10 seconds later, he had disappeared into the crowd. None of the friends that we were with had seen him run off. Fortunately, I knew what he was looking for, so I found him within a few minutes.
Window and door locks may not be enough to stop a person from eloping, but they can slow things down just long enough to attract attention. By the time my child was 3 years old, he was strong enough to push furniture across the house so that he could climb up and undo any locks out of his reach – but as soon as I heard the furniture moving, I knew what was happening.
Many companies now market window and door alarms specifically for families of children with special needs. Again, an alarm does not prevent wandering, but it does alert others to what is happening.
Speech and behavior specialists recommend a laminated stop sign on all exits to the home. A sign may cause the wanderer to slow down and think about what he or she is doing. In addition, labels on other doors can help a wanderer find what he or she is looking for more efficiently – sometimes people end up outdoors when they were only looking for the linen closet!
5. Leash or carrier
Safety harnesses for young children are widely available from places like Amazon. Harnesses typically look like a preschool-size backpack with a leash for the parent to hold onto. Harnesses can be useful for teaching young children about safe behavior in public, but are not a permanent solution.
An alternative to a harness is a backpack carrier such as the Ergo carrier for children up to 45 pounds. The advantage of a carrier is that it encourages bonding and communication between parent and child, which in turn reduces elopement behaviors when the child is not in the carrier. I preferred using a carrier because I could carry my toddler safely and meet his needs while holding my older child’s hand and meeting his needs at the same time. Both children felt secure and loved, and they did not feel the urge to elope.
6. Sleeping arrangements
Since daytime and nighttime wandering is associated with many types of sleep issues, it is necessary to re-think all parts of the bedtime routine and sleep environment. Many families find it necessary to sleep in the same room with a wanderer to ensure safety. My husband and I moved our child’s twin bed into our room and blocked the door at night. Whenever he jumped out of bed and started running in a panic, we would carry him back to bed and help him fall asleep again.
Other families may choose to install a Dutch-style door for a child’s bedroom to prevent wandering but allow communication. Look for creative solutions to help everyone get a good night’s sleep.
7. Bathroom arrangements
Even Mom has to use the bathroom occasionally. My child would wait until I could not put off using the bathroom any longer, then bolt for the door. I made it a habit to block the bathroom door with my foot and hold him with one arm while I relieved myself. I tried to make the bathroom comfortable for him by providing books, singing songs and having him sit on a stool.
“Danger” was one of my most frequently used words when my children were young. With no sense of caution, they needed extra assistance to learn what was safe and unsafe. Work with a speech therapist to learn simple words like “danger,” “stop,” “OK” and “safe” as receptive and expressive language goals.
9. Social stories
Social stories are short first-person stories written in the simplest language possible. If you know that a situation is likely to trigger elopement, create a social story that outlines appropriate behavior. Special education teachers and speech therapists are wonderful resources for ideas on social stories.
10. Satisfy curiosity
When the cause for elopement is an overwhelming desire to explore, then the “cure” for the behavior is to satisfy the person’s curiosity about the world. This was the main strategy that my family used to reduce eloping behavior. We went for neighborhood walks at the crack of dawn and at sunset in all kinds of weather. We went grocery shopping at 5:30 am (no lines at checkout!). We attended religious services several times per week and explored every nook and cranny of that building (with permission, of course).
We visited museums, zoos, parks, anything that was open to the general public. I lifted my child so that he could see things from varying heights. Over time, he became accustomed to all types of sensory input, he became comfortable with the world around us and he didn’t run away anymore. Dr. Temple Grandin supports this method, writing, “The more experiences you have, the better you learn to cope because you have more data in your database. You must get out and do things.”
11. Indoor “track”
Many wanderers need a safe place to stretch their legs. Architects specializing in home modifications for people with disabilities recommend a walking loop in the home. Going through each room of the home can bring comfort and a sense of security to the wanderer. If your home does not have an open or circular layout, encourage your wanderer to walk from one end of the home to the other with a mini-loop at each end.
12. Traffic sign on your block
If a family member has a history of wandering, you can petition your city government to have a street sign installed to alert drivers to the presence of a person with a disability. Many neighborhoods now have signs announcing, “Deaf Child in Area” or “Autistic Child in Area.” Every city has a slightly different procedure to request a sign, but the municipal clerk’s office is a good place to start making inquiries.
13. Ask for help
No one can get through this alone. Taking care of a wanderer means being alert even while sleeping, and that’s the fast track to total burnout. Impress upon friends and family the seriousness of the wandering behavior, and ask for help – to make breakfast so you can rest, to stay with you for a few days to relieve stress, to come over on a Sunday afternoon so you can do basic chores, to help you find out how to request respite care through your insurance or the county’s public health department. People are more likely to respond positively to specific requests like these rather than general distress.
Just In Case
When elopement does occur, there are tools that can increase the chance of a positive outcome. Think ahead about how you want the situation to be handled.
14. Medical Alert bracelet
A medical alert bracelet or necklace can give important information to first responders in a case of elopement. My child wears a bracelet with his medical diagnoses, his name, and my phone number. Here is a review of medical alert options.
Many people who are at risk for wandering either wear a GPS or carry one in a backpack for an immediate pinpointing of location during a wandering episode. Here is a review of GPS units for wanderers. You may also want to check out Angelsense as may families have found it helpful.
16. Emergency plan
Some families are now coordinating with local first responders to develop an emergency plan for a wandering family member. Call your local police or fire department’s non-emergency number and request a meeting with a community liaison to start the process. An emergency plan is an educational process both for the affected family and the first responders. For example, families need to know the typical response time once a 911 call is placed, and first responders may need training in the best ways to interact with a frightened or confused wanderer. By working together, we can reduce the number of elopement tragedies in 2016.