An estimated 49% of those diagnosed with autism have wandered or eloped from home, from school, and while out in the community. Those who wander tend to be drawn to water – pools, ponds, canals, lakes, rivers. Wandering can, and has, resulted in injury and death. Parents need support. Educators need support. First responders who are called to join search efforts when a child wanders need support, too.
Even though I possess each of those, Ronan has still managed to wander.
While I walked into the kitchen to unload groceries the other day, my non-verbal son, Ronan, tried to walk out the door. It was my fault the door was unlocked. I hadn’t finished unloading the car, so I hadn’t secured the door just yet.
Thinking Ronan had gone to the living room, I started to put some food away. While my back was turned, Ronan made his way to the den where I’d left the door ajar. The den door leads outside. Ronan doesn’t like to play outside. Content in the house, he is happy and safe indoors. But not that day. That day, while I began to put groceries away, he thought he’d go explore.
Thankfully, we have all sorts of “bells and whistles” on every one of our doors that leads outside. The bells on the door handle jingled when Ronan reached for it. That noise tipped off his younger siblings, who blared for me loudly while trying to block their brother from going any further.
“MOM! MOM! RONAN’S TRYING TO GET OUTSIDE!”
I swiftly intercepted Ronan before he could take a step into the big, big world and thanked my children for being so vigilant. Redirecting Ronan, I lead him away from the door, locked it, and brought him to another room where he could play. Shaking my head, I thanked his Guardian Angel and then muttered under my breath, Two seconds. That’s all it took. I turned my head for two seconds…
Last week wasn’t the first time that Ronan attempted to wander. He’s made it out of the house and down the street before. Since it had been awhile since Ronan wandered, after last week’s incident I sat down and reviewed some wandering safety tips. My go-to resource has always been the National Autism Association’s AWAARE page. Going through their checklist helped remind me where I need to ramp up my own personal efforts. It also reminded me how grateful I am for groups like the NAA. When Ronan first wandered years and years ago, I reached out to them. Within in hours of contacting them, I received a call from one of the board members. During that call, I was given helpful information as well as a great amount of hope.
That information and hope got us a few steps ahead of Ronan, but since he has not stopped attempting to wander, I constantly worry about Ronan’s safety. I know that other parents face that same worry. NAA endeavors to help as many parents as they can, including and especially those whose children wander. Another group that’s also concerned about autism and wandering is working at the legislative level. Working to pass a bill, H.R. 4919, the Autism Safety Coalition shared the following information on their website:
“A 2015 study found that 27% of children with developmental disabilities are reported to wander (or “elope”) from safe settings each year. In 2015, 31 individuals with autism died after wandering away from a safe setting.
Kevin and Avonte’s Law of 2016, H.R. 4919, addresses wandering incidents and fatalities in children with developmental disabilities. If passed the bill would:
– Ensure that grants from the U.S. Department of Justice can be used by state and local law enforcement agencies and nonprofits for education and training programs to proactively prevent and locate missing individuals with autism and other developmental disabilities.
– Make resources available to equip first responders and other community officials with the training necessary to better prevent and respond to these cases.”
Kevin and Avonte’s Law needs to pass and pass before any more lives are lost to wandering.
Photo credits: Autism Safety Coalition
After making some calls Friday, and after getting in touch with some of the leaders in the Autism Safety Coalition, I learned that H.R. 4919 has 75 co-sponsors. I learned that the bill was recently referred to the Education and The Workforce Committee. I also learned that it could go to the floor for a vote. Our community is all too familiar with the devastating results of wandering. We need to rally support from others now. That can be done rather easily and quite quickly.
This is where you come in.
Tomorrow, when their offices are open, call your Representatives http://www.house.gov/representatives/find/ and ask them to co-sponsor Kevin and Avonte’s Law. If it’s your child who wanders, tell them your story. Let them know that if enacted, H.R. 4919 would help families like yours. If you’re calling because it’s your friend’s child who wanders, tell your Representative that the law would work to keep children with autism – and other developmental disabilities – safe.
That’s okay, you can send the message in an email. (Use the same link http://www.house.gov/representatives/find/ to find your Representative’s webpage and their email address.)
One more request.
For those families in California, Virginia, and Wisconsin, you have one more call to make or one more email to send. Please contact the following members and ask them to support H.R. 4919:
California – Congressman McCarthy (202) 225-2915
Virginia – Chairman Goodlatte (202) 225-5431
Wisconsin – Speaker Ryan (202) 225-3031
My son is completely dependent on us. If Ronan goes out undetected, we could honestly lose him forever. Unaware of traffic, unaware of potential dangers, and unaware of how to take care of himself, I go into panic mode the second Ronan tries to leave the house. Because of how quickly and how quietly he can slip out, I live in constant fear that he will get out again. I live in fear that he could also make it farther than he wandered before.
To the neighbor’s pool.
To the pond just beyond the field.
To the creek that leads to the river.
Even with the locks, and the alarms, and the constant vigilance, I live in fear. Living in constant fear is no way to live. But as the parent of a child with autism who wanders, it’s the only way I know how. Kevin and Avonte’s Law could change that. I am praying that it passes. For Ronan’s sake. For other kids’ sake. And for my sake, too.
Cathy Jameson is a Contributing Editor for Age of Autism.