Autism and Wandering

Wandering, coupled with autistics‘ common attraction to water, too often leads to fatalities. In fact, a National Autism Association study showed that of lethal outcomes related to wandering between 2009 and 2011, 91 percent drowned. These deaths have led to a call to action to raise awareness about the dire consequences of wandering and bolting and, more importantly, put into place stronger, more effective anti-wandering tools and policies.

Lori McIlwain, executive director of the NAA, noted that “only 50% of our parents have received advice about wandering prevention from a professional. Sadly, many in our community are unaware that wandering is even an issue.” This, despite the fact that wandering is seen in nearly half of children on the spectrum—a rate four times higher than their unaffected siblings—and a medical wandering code was added to the autism diagnosis in October 2011.

Jo Ashline speaks to this very point with her blog post “Outrunning Autism: When Our Children Wander.” She writes that when her son was first diagnosed at 2, the specialists “were detailed in their description of the ways our son would fail before he even had the opportunity to try, but not one of the doctors we relied on for expert advice told us that our son would forever be in constant danger because of elopement and wandering. Like most families raising a child with autism, we had to find that out for ourselves.”

But awareness among parents, caregivers, teachers, and clinicians, as well as the general public, isn’t enough. “We need federal programs dedicated to law-enforcement training and tracking technology similar to what is available in the Alzheimer’s community,” McIlwain says. To that end, the NAA is working to get children with disabilities covered by the AMBER Alert system.

The U.S. Department of Justice’s AMBER Alert has recommended criteria applied by most states to cover children 17 or younger when law enforcement has a reasonable belief that a child has been abducted and is in imminent danger of bodily harm or death. When issued, the alert’s automatic protocol is put into place with state, media and highway notification; there are intrusive public notifications that break into regular TV and radio programming with a description of the child; meanwhile, the child’s name and other important information, including the Child Abduction flag, are entered into the National Crime Information Center (NCIC) system.

Short of an AMBER Alert expansion to include at-risk disabled children like autistic wanderers, law enforcement may currently issue an Endangered Missing Advisory. Unfortunately, there are fewer resources associated with this advisory, and there isn’t the same kind of urgency or reach. Typically, when a disabled child is at risk or missing, the authorities will contact the media, but there will be no intrusive alerts or highway signs and there is likely a longer waiting time than AMBER, which has little wait time once the criteria are met.

McIlwain says that most progress has been made thanks to agencies like the National Center for Missing and Exploited Children. “They’re helping with both prevention and response on a national level.”

Beyond the government role, the NAA cites the need for a multi-layered approach to prevent, and respond to, wandering emergencies as “necessary to achieve optimal safety for your child. This includes making every attempt to educate your child on self-help skills including swimming, making every attempt to educate them about safety and potential dangers by using social stories, language, prompts, or any communication mechanism best suited for their individual needs.” Meanwhile caretakers can work to address any triggers causing or contributing to a child’s wandering.

“The most important thing is that the at-risk child or adult is learning to keep themselves safe,” she says, “while proper safeguards and adult supervision are also in place to help ensure their safety.”

Ultimately, though, McIlwain says tracking devices remain the best way to locate a child, recommending those such as Project Lifesaver and LoJack that use radio frequencies, are operated by law enforcement, and are waterproof. (She does share one low-tech and inexpensive but highly effective tool: door chimes that alert parents and caregivers when a door or window is opened from the inside.) She also says first responders should be dispatched immediately to search nearby water and implement any tracking device the child might have.

Judith Ursitti, Autism Speaks’ director of state government affairs and mother to autistic wanderer Jack, agrees with McIlwain about the tracking devices. She knows that even the most hypervigilant of parents can’t always have their eyes on their child. She wrote on her Facebook page that kids who wander can disappear in a split second, no matter how careful family members might be:

“For those of you who have been to our home, you know it’s like Fort Knox. Special locks and alarms are on all of the doors and windows to keep him from escaping if we happen to turn away for a split second. When we moved in, the first thing [husband] Andy did was to visit our local Police Station to let them know that Jack could potentially wander. I went to all of our immediate neighbors, met them and then asked that if they ever saw him wandering down the road, to please grab him.”

In addition to these precautions, Jack wears a Project Lifesaver bracelet. “People should be able to access Project Lifesaver-type devices no matter where they live,” she wrote. “That is not the case because there is an upfront cost to local law enforcement to set up the system. So many families ask me how to get a device but they can’t because of where they live. In Massachusetts, you can now get one no matter what part of the state you live in. This just happened last year thanks to the folks at LoJack and the Flutie Foundation.”

Not that such systems are without detractors, among them autism mom Kerima Cervik, who blogs at The Autism Wars. She says she would prefer an alert system based on the Silver Alert for Alzheimer’s patients, asserting that it would provide an even faster response than the AMBER Alert-based plan suggested by the NAA. As for tracking devices, Cervik adds that they “don’t address the issue of wandering. Think of them as house arrest devices for children. The police then prosecute parents when the devices fail, and no device has survived water immersion.

“So while they work well for seniors with cognitive impairment and degenerative conditions like Alzheimer’s or dementia,” she argues, “they don’t work well for autistic children and young adults, many of whom will gravitate to water—water is soothing.”

Concerns have also been raised that rather than running to something desirable such as water, bolters are running away from something, possibly overstimulation or, in the worst case, abuse.

McIlwain responds by saying that just as autistic children need to be given the tools and education to communicate so that they don’t wander, they also need to be able to tell responsible adults if they are being abused. Right now, she notes, only nonverbal children whose parents can afford iPads and other communication devices have them; she’d like to see all autistic children have the means to get their thoughts and needs across.

But in the end, it’s the question of how to help exhausted parents that is most resounding among autism families. “Jack requires 24/7 supervision,” Ursitti writes. “He is surrounded by a loving family who is ‘hands on.’ But he has gotten away from us—more than once. For those who say that this sort of thing doesn’t happen to parents who are doing their job, with all due respect, please spend 24 hours with a family like mine. Your perspective will change dramatically—I guarantee it.

“Less judgment. More education, support, awareness, treatment, acceptance, accommodations and understanding. Please.”

To learn more about wandering prevention strategies, including waterproof tracking devices, ways to secure the home, and other steps to guard against wandering, visit http://www.awaare.org/, which also offers the free Big Red Safety Toolkit downloads on wandering prevention.