CELESTE HEADLEE, HOST:
This is TELL ME MORE from NPR News. I'm Celeste Headlee. Michel Martin is away. Coming up, we talk to a journalist who's traveling around the world using his feet and turning his experiences to interactive lessons for inner-city students. That's in a moment. But now, we turn to a story that hits home for many parents. The search in New York for Avonte Oquendo is now in its seventh week. He's the 14-year-old teenager with autism who wandered off from school after lunch. For most parents, a child going missing would be their worst nightmare. But for some parents of autistic children, it's a reality they have to grapple with on a daily basis.
According to the Journal of Pediatrics, 49 percent of children with autism are prone to wandering off. And even more alarming, 41 of these kids have died since 2011. All this raises questions about what can be done to keep these kids safe. And joining us now to talk about it is Lori McIlwain. She's the cofounder and executive director of the National Autism Association. She's also the mother of an autistic child. Welcome to the program, Lori.
LORI MCILWAIN: Thank you.
HEADLEE: I found it really powerful in your writing about Avonte - your son is 13 now - but you talked about an incident when your son was 7, which was the first time, I guess, he'd wandered off, or at least gone far enough that you had trouble finding him, right?
MCILWAIN: That wasn't the worst time. He actually started wandering - in daycare, he was in an inclusive setting specially designed for kids with autism, and he would start out wandering from classroom to different parts of the building. And when you have a child who can't answer to their name, that can cause quite a bit of panic. So we knew that it was an issue, and actually attempted to warn schools that this could happen.
When he went missing in 2007, he actually left the building. He headed towards the highway, and thankfully was found by a kind citizen. And the school did not call the police. They found a different school to take him to, and then that school called the police. I did not have an identification on him, so no one knew where he belonged. And around that same time, another little boy went missing in Michigan, Benjy Hile . He was the same age. And unfortunately, he was found dead four days later in a creek. And a lot of these deaths are caused by drowning. So it's very scary for all of us, and it led to a lot of resources being built over the years.
HEADLEE: You wrote that often autistic children are attracted to water, which accounts for the high number of them who end up drowning. But what is it that causes the wandering behavior?
MCILWAIN: That's the number one question we get. In terms of their fascination with water, no one knows. We can only speculate that it feels good. It's therapeutic. It's nice to look at. In terms of the reasoning for wandering, parents report a lot of times that their kids wander because of anxiety or stress, trying to get away from something. Most wandering incidents are goal oriented. So like with my son, he was trying to get to the highway because he loves highway exit signs. Other kids, they love water. They love fountains. They have a favorite restaurant that they want to get to. So it's goal directed, and so they're looking to get to that favorite thing or special topic.
HEADLEE: And you have said that you sometimes keep your son home on days when it might be difficult for the school to keep track of him, I guess, like open houses or something like that. What do you tell parents who might be scared to death to send their kid to school where you have hundreds of kids and it's hard to keep track of them all?
MCILWAIN: We tell parents, first of all, once they put their child in school, to talk to the teachers. Awareness is so important. And just letting them know that it could happen is enough for a lot of teachers to prevent it from actually happening. Parents are going to want to note any kind of breaches in security - fence gaps, things like that - any nearby hazards such as water or traffic. You know, we were a special case, and I don't hear from too many parents that have to keep their kids home a lot.
With our son, it was a particular therapist who, you know, he had gone missing a couple of times under her care. So we weren't comfortable keeping, you know, him at school on those particular days. And that's a risk for parents like us. And it was very scary, but that was our only choice. They would not give us a different therapist. And luckily, at the school he's at now, he's very safe. We haven't had any incidents, and the staff is wonderful.
HEADLEE: And yet, I can't help but feeling that Avonte Oquendo's mother probably felt like she did all the right things. Her son was at a school that specialized in serving special needs kids. She'd informed the staff that he tended to wander off in-between classes, and that's exactly what happened. He was supposed to be going from lunch to class and somehow slipped away.
MCILWAIN: Well, in that study that you mentioned earlier with the 49 percent, 29 percent of those parents reported that their child had gone missing from a school setting. So it's a very large problem. And we need Department of Education guidance on this problem. On a case-by-case level, I mean, you know, some of my child's wandering incidents were born out of innocence and others were blatant negligence. So it depends on the school and the teacher, but all of them need training support and resources.
HEADLEE: Now you have a tracking device of some kind on your kid now?
MCILWAIN: So it's through Project Lifesaver, and this actually emits a radio frequency. So if he's ever missing, law enforcement can dial into that frequency and find him that way. There's also other radio frequency tracking devices out there, like LoJack, and then the GPS kind, which is more retail based. That tracking device went on him right after that incident in 2007 and hasn't come off.
HEADLEE: Is it expensive? I mean, what if a family doesn't have insurance or doesn't have disposable cash?
MCILWAIN: This runs through law enforcement. So law enforcement absorbs a lot of that cost. On the GPS side, parents may have to pay a fee each month. NAA, which is my organization, we try to help out as much as we can. There is a medical diagnostic code parents can use with insurance companies. And that's a wandering medical code called V40.31. And they can use that to try to get medical reimbursement for a tracking device.
HEADLEE: So as your son gets older - he's 13 now, correct? Does this become something that an autistic kid would tend to grow out of? Or at some point, do you have to worry about an 18-year-old going missing and people not being as concerned because he's an adult?
MCILWAIN: This doesn't go away. So whereas wandering was once a problem, now it's bolting away from things that my son is scared of, and that happens a lot with our kids and our teenagers. A lot of teenagers that we see are disoriented or they go missing because simply they became lost. With autism, law enforcement should treat each case as critical. And that's important because a lot of times our kids might have the mentality of a very young child. A multilayered approach is very important. So tracking is only one small piece. It's supervision, security, survival skills. All of those things need to be in place for adults, teens and children.
HEADLEE: Why are autistic kids who go wandering not included in, say, the Amber Alert system? Why can't they just suddenly bring all those forces to bear that they do when a kid is kidnapped?
MCILWAIN: Well, the Amber Alert is designed for kids who are known to be abducted. And this is something I learned with Benjy Hile's case is that they could not use the Amber Alert to find Benjy. Federal guidelines are very strict, and most states follow these five guidelines. And our kids do not qualify. What law enforcement can do is issue what's called an EMA, or Endangered Missing Advisory, similar to the Amber Alert and available in every jurisdiction. Amber Alert would be nice to have. Our kids that do die, go straight to water, they die very quickly. So prevention is key here.
HEADLEE: Pardon me if I'm wrong, but I thought that for a Silver Alert, that could be for an older person who had wandered away. So I guess the guidelines are different whether you're dealing with a child or an older person.
MCILWAIN: That was a little eye-opening when I first started looking into this issue in 2007. My son did not qualify for an Amber Alert. He also did not qualify for a Silver Alert in my state of North Carolina. That has since changed. Silver Alert has opened up their criteria to include those of all ages. But some Silver Alerts are still out there. Their criteria is, you have to be over 65. You have to be a senior with a disability. And they actually refer to it as the Amber Alert for seniors. Many not knowing that Amber Alert doesn't cover our kids with disabilities. So there needs to be one universal alert system for kids and adults with disabilities.
HEADLEE: So let me ask you, as somebody walking down the street, if I see a kid who I suspect may be wandering, what do I do?
MCILWAIN: Use the three S's, which is stop, seek and stay. So stop to help. Seek assistance from police, and then stay until they arrive. If the child is, say, wearing a shirt that has Elmo on it or SpongeBob, use those clues to sort of engage the child. But it's certainly, be on the lookout for anybody because, you know, my son almost wasn't stopped. He was 7 years old and the man thought he might be old enough to be on his own. And certainly with Benjy, the 7-year-old who went missing around the same time, he was also seen and that person thought he was old enough to be alone. So you don't always know. It's always good to stop and inquire.
HEADLEE: But you said that many of these kids go wandering because of anxiety issues. Does that mean I need to be careful about how I either touch or speak to the kid?
MCILWAIN: We tell people to, you know, kind of approach it in a passive way. Contain the child in a passive way to keep him or her from running away. But certainly, if a child is walking into traffic, if they're about ready to go into water, you need to stop that child.
We had a child last year, actually out of Australia, who went into the water. A news crew found him. He had been missing for 16 hours overnight and - a little boy going into the water, and they had to intervene. So that child very well may have died if that person wasn't there. And, of course, you cannot use verbal commands. So, you know, when they told the child, stop, the child didn't listen. You have to get in there and intervene and get the child out of danger.
HEADLEE: Lori McIlwain is the cofounder and executive director of the National Autism Association. She joined us from Raleigh, North Carolina. Lori, thank you so much.
MCILWAIN: Thank you. Transcript provided by NPR, Copyright NPR.