Recently Brenda, a mom and autism social media specialist, posted a story to her website http://autismbeacon.com/, originally shared by a news organization. The story led with a terrifying statistic: according to the National Academy of Pediatrics, nearly half of children with autism will run away before their 17th birthday. However, according to AWAARE, or the Autism and Wandering Elopement Initiative, a poll conducted 5 years ago found 92% of parents reporting “a tendency to wander” in their children with autism.
Parents of children with autism have had to create their own networks, do their own research, gather their own information, be their own advocates, lobby organizations for the similarly needed but unfunded support as persons with other challenges receive. Simply put, these families have had to be the change they desperately needed, which Brenda’s website (and her activity in additional social networks) illustrates. Many of Brenda’s followers have responded to her article post by sharing their suggestions, tips, and resources for elopement. I appreciate all of them, and have integrated many into my own practice or conversations with families.
So here are mine.
- At any level of your involvement, know what YOU can do to prevent and respond to elopement. Families can teach safety skills and do preventative training with all family members and the community. Community leaders can advocate for mandatory training in nonviolent crisis intervention, responding to community safety alerts, warning signs in neighborhoods, fences on playgrounds at churches or schools, and awareness campaigns and meetings. School professionals can learn to not take it personally when a child’s parent demands in his IEP meeting that we need a fence around his playground because paraprofessionals might not be fast enough to prevent his running into the street.
- Understand reasons individuals might run away, elope, or bolt. As with any behavior used by an individual with autism, elopement often occurs to get away from a situation that is challenging, aversive, or overstimulating. Elopement also occurs to go toward a situation that is more pleasant, familiar, calm, or interesting. Does your student have a way to request visiting his favorite spot or a way to communicate that he needs to leave? Do others recognize her signs of distress that we might consider “precursors” to elopement? Do others in the family and community recognize how to interrupt a possible elopement and redirect to safety? Is everyone trained in nonviolent crisis intervention so that the child is not handled in a way that makes a dangerous situation even worse?
- Know which behaviors you need to teach. Teach family members to reinforce these behaviors often enough for the learner to master them.
- Responding to safety questions: When the child is very young, we can begin by teaching children to respond to the sound of our voice. At first, it’s a safety skill to look when a parent calls our name, or to come nearer when our name is called. If your child is vocal, we can teach vocal responses to social safety questions. When mom calls “Danny!”, does Danny call back “I’m over here”? There are different levels of each of these skills, and as a student learns more sophisticated ways of answering questions, we should continue to practice safety questions. Can the child answer what’s mom’s name? Can he answer where he lives?
- Learn who the community helpers are in our environments, and where they are located: We can teach children to recognize community helpers, and later, what to do if they see unsafe situations.
- Teach safe behavior: Does the child consistently look for an adult and ask prior to leaving the house? Does the child request a parent or sibling when he wants to take a walk, or go play outside? Beginning when the child is very young, we can teach him to look around and see an adult’s face before starting to do an activity where supervision is required. When one child was very young, his team placed a picture of his face on every door in the house- EXCEPT the back and front doors, and the door to the basement. On THOSE doors, we put a picture of the child with his mom. Every time we went out that door, we tapped the picture and said “We always go out THIS door TOGETHER. Where’s mom?” and we taught the child to go get mom’s attention. After that, they went outside together. Does the student stay close when out with others? Does the student seek an adult if he gets separated from the group? Just like the research suggests, students CAN learn to do this- but they need serious practice under conditions very similar to the real thing (see this blog for an example)
- 4. Prevent, prevent, prevent.
- Not once, but THREE times in the past year, I have heard a family say something like this: “I didn’t think he would leave, but after we found him down the street in a neighbor’s yard, we installed fingerprint locks on all the doors.” Listen: If we know 92% of parents report their child with autism occasionally wanders, it’s just a matter of time. If your child hasn’t run away yet, fantastic! Order locks today. There are many varieties of locking mechanisms that prevent leaving without someone else in the house hearing it. Consider whether your family needs bolts that prevent doors or windows from being opened, or other mechanisms that alert you or the police when a door is opened when the security system is armed.
5. Research what other parents have done to prevent. Consider make an outing plan, including having a package of materials ready. If your child goes into the community, which adult is responsible for monitoring his location? Where are the safety phone numbers? Does he have activities with him that he can use to calm down if he becomes distressed or if he is in a situation he finds overwhelming or overstimulating? Where will he go if he needs a break? How will he find the needed information if he forgets your phone number? Does your community participate in Project Lifesaver? http://www.projectlifesaver.org/
6. Understand there may be help waiting for you. If your loved one is on one of the waivers supporting children or adults with special needs, they may be able to get locks or security systems funded. There are programs out there waiting to donate a fence, a lock, or even money for training.
7. Tell someone you’re concerned. Many families report they never received advice from a professional, or never discussed with their pediatrician that elopement was a concern. We need to educate pediatricians and other providers to ask about this. Primary care providers can collaborate with specialists to prevent dangerous behaviors, but this can only occur if both parties know they need to talk to each other.
8. Be aware of organizations that can help. Here is the Frequently Asked Questions page for AWAARE. You can also check out what other agencies have compiled to support families.
9. Know the research and understand that there ARE evidence based ways to teach safety skills. This article is a great example. This article shows the effectiveness of Behavioral Skills Training to teach abduction prevention skills in children with autism, and the results of teaching were maintained at follow up checks after the training had been completed. This was published in the Journal of Applied Behavior Analysis by leaders in the field of behavior analysis and used instructions, roleplay, modeling and feedback to teach a skill all children need, especially children with increased risk of running away.
Thanks for reading. We’d love to hear your own tips and stories.