Five young lives lost this month alone, and all in the same week.
Because wandering is very common among children with autism. Half of the children on the spectrum wander, and those with autism are four times more likely to stray than their typically developing peers.
Despite parents’ best efforts, wandering can be impossible to avoid for many reasons. For example, children are able to figure a way out of the house no matter how many locks are on the doors and windows. Door locks, alarms, tracking devices and close supervision help. But despite efforts to teach them, many individuals with autism cannot recognize danger and don’t know how to keep themselves safe. Plus, these kids (as well as some teens and adults with autism) are frequently drawn to what fascinates them, and in many cases that’s water. Or, they may be trying to escape or avoid an uncomfortable situation. What’s part of an everyday environment for a typically developing child may create anxiety or be intolerable for someone with autism.
In so many scenarios, a distraught parent tells of leaving a child alone for no time at all: a quick trip to the bathroom, the room just long enough to answer a phone call or take dinner out of the oven.
I cry with the parents of lost children each time I read the headlines. I pray that I am never one of them. I don’t think I will be but despite our best efforts, I am nowhere near convinced that Evan knows how to keep himself safe. Would he dart across the street to retrieve a ball even though we’ve talked safety a billion times? Would he jump in the neighbor’s pool if he found an open gate, even though he knows it’s wrong? I really don’t know.
Losing Evan is always at the back of my mind. It’s happened twice in nine years.
The first time, he was five and we were stuck at an airport for most of the day. We figured the best way to pass the time with three young kids was by getting a hotel room right at the airport. The manager was nice enough to let us stay in an unused conference room/hotel suite. The space was larger than we needed, but the price was right – and keeping Evan in a quieter environment for the duration of the delay was perfect.
The door to our room was heavy and hard to open. Not that it mattered. Evan was not one to wander off. So when there was a knock on our door, and we opened it and discovered someone from housekeeping clutching our son’s hand, we were beyond surprised. She told us she had found Evan down the hall. He was staring at the chandelier in the lobby. He loves lights. Chandeliers are his favorites. At the time, he didn’t know how to communicate his desire to see the chandelier. He just knew that he wanted to see the light, so somehow he managed to open the door off he went.
The second time he got away without us knowing was almost three years ago. My brother and sister-in-law stopped by and their dog was in the car (and no, it wasn’t too hot or too cold, and the windows were down). Evan apparently wanted to see the puppy. We didn’t think he even knew how to unlock the front door or open a car door, but he managed to do both. Fortunately, dog and boy were OK.
Of course as a parent your mind races to the “what ifs” and lands at the worst possible scenario. Our situations, while scary and brief, pale in comparison to the stories that some of my friends tell.
One woman I know has an 11-year-old son who has autism and does not speak. A few months ago, he bolted from his securely locked house when his mom left the room to answer a phone call. Immediately, she noticed the open door and saw her son walking down the street. Frantically, she called for him and then watched in terror as an oncoming car swerved; it narrowly missed him.
She described the scene as surreal. She felt as if she were watching a movie of someone else’s life with someone else’s kid. Her severely autistic son didn’t even try to get out of the way. He never cried out. There was no reaction; he just walked, expressionless, toward his mother when it was all over.
I know of another parent who is afraid to sleep because her child leaves the house in the middle of the night. The alarm ultimately wakes her up but she is worried that in the darkness she will lose vital seconds in the quest to find her child. Similarly, I read about a mom who moves the couch in front of her child’s door each night and sleeps there. It’s the only way she knows she will wake up if her son tries to leave.
Another friend half-jokingly says she worries that her son – who often wanders into other homes when he leaves on his own – will be shot by a neighbor who mistakes him for a burglar.
To those who say parents need to better supervise their children; we do our best. But 24/7 supervision is unrealistic and while technology helps, it’s not guaranteed.
A tracking device works only if a child is wearing it. Since many kids on the spectrum have sensory issues, they are reluctant to have a foreign object attached to the body. There are devices that attach to a child’s shoe but that would be useless to children who are barefoot when they leave the house. Locks are good until a child figures them out or catches you the one time in a thousand when you forget to use it.
As parents, we all go through phases where we know our children don’t have the capacity to keep themselves safe when unsupervised. It’s called having a toddler, and that period of time is beyond brief. Imagine having a toddler for life?
So what do we do to prevent these horrible tragedies?
For parents with kids on the spectrum, the Autism Safety Coalition is a valuable resource.
Awareness and advocacy are important. Hopefully Congress will pass Avonte’s Law; legislation named after Avonte Oquendo, a 14-year-old boy with autism who wandered away from his New York City school in 2013. His body was discovered a few months later in a nearby river.
Avonte’s Law would provide funding for education about wandering prevention to law enforcement agencies, first responders, schools, clinicians and the public. It also would make available response tools and training for law enforcement and search-and-rescue agencies, including tracking technology. Many of these same resources already are available to prevent wandering and expedite the safe return of those with Alzheimer’s.
Search the headlines right now, and I can almost guarantee there is a story about an active search for a child with autism. It happens everywhere, it’s scary and as much as society may want to blame someone; it’s not neglectful parenting in an occupational hazard of autism.