Lori Orrico has become an expert at foiling escapes. Her 12-year-old son, Jimmy, has autism. Because he has difficulty communicating verbally, Jimmy often bolts when he’s frightened or overwhelmed. “If something scares him, he launches into fight-or-flight mode,” says Orrico, who lives in Denville, New Jersey. “I’ve chased him through grocery stores and department stores trying to get to him before he gets to the front door.”
As many parents are well aware, wandering, or elopement, is a huge problem for families with a child with autism. About 50 percent of autism families report having had a child elope, and parents often rank it as their top stressor, says Lindsay Naeder, director of the family services autism response team at Autism Speaks.
Wandering can occur for a variety of reasons. A child may be trying to escape something unpleasant, or may want access to something but lack a way to communicate that desire. In some cases, wandering can result from self-stimulatory behavior. “Some children with autism like to pace or run and might not understand the potential dangers,” says Bridget Taylor, a psychologist and director of the Alpine Learning Group in Paramus, New Jersey.
Both Naeder and Taylor counsel families to address the problem on more than one front: figure out how best to prevent wandering and how to quickly respond if the child runs off. “It’s important to develop a multifaceted approach and keep it updated,” Naeder says.
For example, children often have a tendency to wander toward things they like, such as traffic signs. If parents recognize this, they can offer alternatives, such as pictures of traffic signs. It can also be helpful to teach children to ask for what they want, Taylor says. For children with limited verbal skills, this might involve a card the child gives to a parent when the child wants to go to a certain place.
Targeted training, such as learning to walk with a teacher or other adult or to respond to words like ‘stop’ or ‘come here,’ can help reduce wandering in children with limited verbal communication. In her practice, Taylor teaches children to say their name and contact information or to give an adult a card with that information when they get lost.
That training came in handy for Orrico on a recent excursion to the movies. Jimmy jumped up in the middle of a sensory-friendly screening at a movie theater, running for a side door that exits onto a busy mall. “It was very scary,” Orrico says. “As the parent of a child with autism, you’re always two steps ahead, trying to plan for any possible event.”
The family had been working with Jimmy for months on the concept of ‘stop.’ They first taught him to recognize a STOP sign and then to read the word in different settings. They practiced in the community, traversing parking lots and crossing streets. “Eventually he learned what he’s supposed to do when he hears the word,” Orrico said.
At the movie theater, Orrico ran after Jimmy, yelling for him to stop. The painstaking training kicked in. As Jimmy got to the door, he slowly turned around and stopped. He responds correctly about 90 percent of the time, Orrico says. “But it’s that other 10 percent that keeps you up at night.”
Tips for preventing and dealing with wandering:
Assess the Environment
Parents can reduce risk of elopement by carefully assessing their home environment. “Safety involves arranging the environment to reduce risk,” Taylor says. Put locks or alarms on doors and windows and use visual cues. Orrico put STOP signs on all their home’s doors to the outside. “Visual cues help him to remember the rule ‘I can’t go until Mom is here,’” she says. A combination of signs and training can be helpful for children like Jimmy, who has learned to open locks. “He’s Houdini,” Orrico says. “You can lock it up with the best childproof locks known to man, and this guy can crack any of them.”
New environments, such as on a family vacation, can increase the risk for potentially dangerous incidents. Even families with careful plans for keeping the home secure may not have the same protections in an unfamiliar location. Naeder suggests thinking about concrete ways the child’s routine might change. If doors at home have an alarm, try to think of a substitute, even if it’s as simple as more supervision, Naeder says. “Plan every step of the way to see if you can put safety precautions in place,” she says.
Wandering incidents increase during summer months, and water provides a particular danger for children with autism. The vast majority of wandering fatalities in these children are related to drowning. “The best way to prevent drowning is to teach children to swim,” Taylor says. “There need to be more swimming programs for children with autism.” To that end, Autism Speaks has developed a grant program to increase water safety training for children with the condition. Instead of a typical swim lesson, such as learning the backstroke, children might learn to stay out of the water and when it is appropriate to get in.
Alert First Responders
“If your child has a tendency to wander or has a communication challenge, consider alerting local first responders,” Naeder says. Some precincts have systems for storing specific information such that 911 calls from certain address will be automatically tagged with relevant details — for example, that it’s the home of a nonverbal person with autism or someone with strong sensory sensitivities who might react badly to loud alarms. Autism Speaks has also developed training programs to teach first responders to deal with wandering incidents.
Develop a Plan
Create a family wandering alert plan. This includes assembling basic information about the child, such as whether they respond to their name, whether they can communicate verbally, where they’re likely to go, and if they are sensitive to light or sound and might hide from searchers. That information can then be quickly disseminated to first responders if an emergency strikes. “The first thing first responders need is information from parents because they know their children best,” Naeder says.
In addition to teaching children to say their information or to offer adults a card with the information, Taylor and Naeder recommend that parents consider identification bracelets and GPS trackers. Jimmy wears a Project Lifesaver tracker. “If ever he elopes, we contact Project Lifesaver and the police station, and they put out a signal and can locate him,” Orrico says.
Also, after a study has been conducted, other researchers review it before it is published. They evaluate the techniques used in the study and the interpretation of the results. They see whether the researcher has read what has already been published on the topic. They decide whether this study gets published in that journal.
Peer review is a way to make sure that the potential biases of an individual researcher are removed as much as possible from their interpretation of the results. It is supposed to help address outside influences that could affect the researcher, such as who will benefit from the outcome of a study. What if a researcher owns stock in a company that is producing a drug that he or she is studying? Peer review is trying to ensure that those conflicts of interest are addressed.
Autism Speaks has assembled a resource list to help prevent wandering. National Autism Association provides a toolkit to help families create a safety plan. Alpine Learning Group offers this Safety Assessment tool.