Having autistic children can make you feel helpless at times. Several years ago on a rare rain-free Spring day, I felt more helpless than ever before when one of my kids asked, "Where's Nathan?" That question was becoming all too familiar in our home. Our 5-year-old son with autism had become a "wanderer." It started when he was about 2 and escalated to the point that we had installed door and window alarms to get a leg up on him.
While our 7 year old started checking the nooks and crannies in the house, three of our teenagers ran out the door with me trailing behind. Outside, we all went different directions as we'd done so many times before. As always, my heart had dropped in my chest, but after 10 minutes of searching, a wave of utter terror ripped through me like lightning.
Nathan wasn't at any of his favorite places. As we started running into each other, I saw our only daughter, then 17, sobbing and our 13-year-old son with a look of shock on his face. I yelled out to them, "Start going door to door. I'm calling 911!" I raced in the house and grabbed the phone. Right as I started to dial, I heard, "I got him. He was on the floor in the back of the van, hiding," our 15 year old Mark said as they all walked in. Nathan, as usual, had a huge grin on his face. I slid down the wall and just lost it.
Mark had found Nathan several times before. Since he has a milder form of autism called Asperger's syndrome, it seems to give him the ability to zone in on Nathan. Now many years later, Mark also relates well to our other son with Asperger's, Justin, who is 9.
We live right off an Interstate 5 off ramp. Obviously, we narrowly missed a tragedy. Enough was enough, we swore this was never going to happen again. We learned our lesson and knew how blessed we were to still have our child. Other families are not so lucky, and the figures are sobering. Liz Feld, president of Autism Speaks, says at least 60 autistic children have died since 2008 from wandering. Ninety percent of those are from drowning. Experts estimate that 49 percent of children with autism attempt to wander from a safe environment. It's no longer an isolated case here and there. The Centers for Disease Control and Prevention say that based on 2008 data, one in 88 American children have some type of autism disorder.
In late January, Sen. Chuck Schumer (D-NY) proposed "Avonte's Law" after 14-year-old Avonte Oquendo walked out of his school a few months ago and vanished. The autistic boy's body was later discovered in the East River. On the day after his funeral, Sen. Schumer, along with Avonte's mother Vanessa Fontaine and grandmother Doris McCoy, held a news conference. He proposed that the federal government should supply $10 million in GPS tracking devices for children with autism. The program would be similar to successful programs that use GPS tracking for people with Alzheimer's disease.
Many parents of autistic kids are using the tracking devices, but they come with a steep price tag. Sen. Schumer said they are about $85, plus monthly fees. He didn't specify if families would receive the devices based on income, but just days after the proposal, the Department of Justice agreed to use existing grant funds for the devices. The Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration, which is a resource for loved ones of wanderers, mentions that some tracking providers, like the country-wide Project Lifesaver, offer grants for some clients.
I'll admit I have some reservations, but overall, the idea is welcome. I'd like to know how this system will be used with so many devices already in place. On the blog, Sarah's Voice, mom Dena Herbert writes, "Why does the government always have to get involved? The line between keeping autistic children safe and not taking away their rights seems to be getting thinner and thinner."
It may seem "conspiracy theoryish," but I do have concerns over a government agency having the GPS coordinates of my kid 24/7. There's some scary stuff out there, like population control fanatics saying special needs citizens are "taking up" the resources. Another movement of educators and parents saying it should be a crime to home school special needs kids is also gaining speed.
I asked parents of autistic children what they thought of the proposal, and the responses were positive overall. All agreed that it would save lives and be a great help, particularly for low income families. One mom emphasized that she supports it as long as it remains an optional program.
"It could be a lifesaver for non-verbal children who wander. Especially as children get older and more clever, keeping them safe becomes more and more of a challenge. Some families keep their homes bolted up like Fort Knox in attempts to keep special needs kids safe," says one mom, Linda.
Two of the moms I asked agreed that they'd like to see the program extended to all children who need it rather than just autistic kids.
"The law is much of a reaction to what happened to one child, rather than a plan to address the needs of parents of special needs children in general," Linda says.
Julia, the mom of a son with mild autism who wanders a few times a year, says, "Wandering/bolting when anxious is common for kids on all parts of the spectrum. Alone he may or may not be able to get the help he needs to get back home, a more severely impaired child definitely could not. Better safe than sorry, and this could keep things on the safe side."
AWAARE's website is dedicated to helping families with wandering. One of its most helpful resources is its "Big Red Safety Toolkit," which is available as a free download. The toolkit includes places to enter critical information, steps to take before an incident occurs and extra resources. AWAARE also has contact information for most city, county and police programs that track autistic children who wander, social stories to teach children how to stay safe and other helpful services. Another way to protect autistic children is to get them an autism service dog.
As helpful as GPS is, never fall into a false sense of security because of it. Nothing can stop all children from wandering, but being aware and taking every precaution available can prevent further tragedies from happening.