Our Autism Story – “Wandering”
50% to 60% of autistic children wander. Of reported wandering events, about 20% result in death and 15% require medical attention. Of those deaths, 80% were caused by drowning with the remainder caused primarily by traffic accidents.
What is wandering? Simply put, wandering (or elopement) is when an individual unknowingly goes to something of interest or leaves something bothersome. The key here is that the caregiver does not know the individual has left. As parents, this is frightening. We have all likely seen stories on the news of an autistic child or adult wandering away, which resulted in death – this could very easily be us.
Brahm wanders. He is extremely visual and does not have regard for safety. If he sees something that is interesting to him, he will go to it. He doesn’t know to ask for permission. He doesn’t have regard for water safely. And, he doesn’t have regard for traffic safety.
Brahm has wandered in many different situations – at stores, at events, at school, at neighborhood parties, and at our home. We are not guaranteed that Brahm is able to communicate his name, our names, our phone numbers and address, and even that he is “lost” to a stranger. Additionally, when Brahm has wandered away and we are calling his name, he doesn’t always respond to us – there have been more than a few times where he is just around the side of the house, but doesn’t respond to our calls.
So, what have we done to minimize the risks of wandering? Brahm has an I.D. bracelet, so that if he does wander, someone will know how to get in contact with us. We practice! We walk the perimeter of our yard (Brahm’s ABA therapists used to do this, too). We practice safely crossing the street to the mailbox. We practice walking together through parking lots and down store aisles. We practice walking on the side of the street. We practice asking to go outside before actually going outside the house. We practice asking to leave the yard before actually leaving the yard. But, even with all this practice, we are not there yet. We installed a fence at the back of our yard to prevent Brahm from seeing and going to the very interesting farm behind us, including a service road that could very easily put Brahm in those statistics mentioned above.
What can you do to help? This question is a big one! While we are trying our very best and making progress, there are moments where we just can’t have our eyes on everything. If you see someone (a child or an adult) that looks lost or confused, ask them if they know who they are and where they are going. If you don’t get a great answer, keep an eye on them for a few minutes to see if someone comes to them. If not and you’re still uneasy, reach out to get some help. This may feel like an awkward situation, but I guarantee their parents will very much appreciate it!
Finally, one of the things we do to prevent wandering is to hold Brahm’s hand everywhere. It may look completely normal for a parent to hold a small child’s hand. However, Brahm is getting bigger – he’s 8 years old, almost 9, and growing like a weed! It looks a little different to see a parent holding an older child’s hand, or even an adult’s hand. We hope our story may shed some light on why you might see handholding at older ages. Please don’t let that stop you from smiling and saying “hello”!