NPR

Cognitive Disability Complicates Search And Rescue

People diagnosed with conditions including autism, Alzheimer's and dementia often wander. Dean King of Outside Magazine, Robert Koester of the Virginia Department of Emergency Management, and Dr. James Harris talk about why, and the challenges of search and rescue missions to find them.

Transcript

NEAL CONAN, HOST:

This is TALK OF THE NATION. I'm Neal Conan in Washington. When 8-year-old Robert Wood Jr. went missing in the dense woods of Virginia's North Anna Battlefield Park last year, search and rescue teams faced an additional challenge: He's nonverbal and autistic.

Wood, like many cognitively disabled, tends to wander. Those who are diagnosed with conditions like autism, Alzheimer's and dementia too often set out on their own. Some become attracted to distant objects. Others might decide to walk to the home where they once lived or where they used to work.

If you've played a part in this story as a family member or a searcher, give us a call, 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Later in the program, the role of the hometown in the life of an Olympic athlete. But first, searching for those with Alzheimer's or autism after they go wandering. Let's begin with a caller, and this is Sara(ph), Sara's on the line with us from Charleston.

SARA: Hi.

CONAN: Hi, Sara.

SARA: Yeah, my grandmother, my mom's mom, was 81 the first time she really disappeared on us. It was Christmas Day about three or four years ago, and we got a phone call around 10 o'clock at night from the police saying that our - my grandmother had been involved in a car accident. Come to find - we get to the scene of the accident, she had locked herself in the car, would not communicate with the police.

She was not fully dressed. She had gotten disoriented, got into her car and drove late at night and caused an accident. She had not been diagnosed at that point. She was still living independently, and we still don't know to this day exactly where she was going. We think she was trying to come to our house, but that was really the beginning of the end, I guess, for, you know, her independence. And it was about three months after that she was diagnosed officially with Alzheimer's.

CONAN: And as you say, the beginning of the end for her independence, those are difficult conversations, to take away the car keys, for example.

SARA: Oh yeah. That was a horrible conversation. It caused a lot of hurt feelings, and it was just a difficult time for the whole family.

CONAN: And did she go wandering subsequently?

SARA: Yeah, it was maybe a year after that that we put her into a full assisted living facility, where she was monitored, and they had the locked doors. And she still managed to get out about a month after she first moved into that facility. And I'm not even sure who found her. I think a good Samaritan saw her wandering out near a busy road and managed to take her back in, and at that point they had to put the bracelet on her that kept her from going out of any doors unsupervised. And she fluctuated. I mean, it was up and down before she, you know, really went downhill, and she actually passed away New Year's Day of this year at 84.

CONAN: I'm sorry for your loss, Sara.

SARA: I appreciate that.

CONAN: Thank you for the call.

SARA: Thank you.

CONAN: Joining us now is Dean King, Dean King is with us on a smartphone from Crillon-le-Brave in France. He wrote the story "Catch Me if You Can" for the August issue of Outside magazine, and nice to speak with you again.

DEAN KING: Hi Neal, great to be here.

CONAN: And "Catch Me If You Can" is about the story of Robert Wood Jr., an 8-year-old, as we mentioned, with autism, not able to communicate verbally and evidently playing a very sophisticated game of hide and seek.

KING: Yes, this is a really poignant story that took place last October, and, you know, Robert was in the woods walking with his father, and the next thing you know, he had taken off. And he was fast, and it's a very hilly, densely forested area with battlefield trenches all over the place, and he got away.

CONAN: And this search, which grew into one of the biggest in the history of the state of Virginia, well, at least according to your article, it raises any number of issues that the searchers are presented with, exacerbated by the fact that these people like Robert Wood Jr. are fearless.

KING: That's correct. You know, from a very early age, Robert would climb up on the refrigerator. He would - you know - they just have so much energy, and they do lack fear, which is one of the reasons why it's so hard to find them. They don't have the normal reactions that say another child would of being scared of the dark or the bogeyman or, you know, or being lonely or even such basic instincts as being hungry or thirsty. You know, they may ignore those things. So they're able to travel and move and don't respond to a lot of the normal things that other people might.

CONAN: And this massive search, well, there are all kinds of jurisdictional issues. Whose policies are going to be followed?

KING: Well, you know, this really opened my eyes to the massive search and rescue system that is certainly in Virginia, which has one of the most sophisticated systems. But there are 700 volunteers around the state. And there's one particular man who's in charge of that, a man named Billy Chrimes, who's with the Virginia Department of Emergency Management.

But really it all starts locally. You know, when there's a lost person, the police will respond first. If they determine that it is indeed a lost person, then they will call in their resources for search and rescue; dog teams, tracking teams, that sort of thing.

And then the state might get invited in, and that's what happened in this case.

CONAN: And then all the volunteers come, as well, which can be an enormous logistical problem. As you point out, some people show up with sandals, inappropriate for searching the dense woods. But they give you the advantage of being able to search a big area.

KING: That's correct. You know, it's sort of a double-edged sword there. You know, while you have these 700 highly trained volunteers around the state who will, when they find out that a person is lost, they will leave their jobs and come out and search for as long as it takes, and their bosses know that they're trained and, you know, ready to do this.

And so people are making tremendous sacrifices. On the other hand, you get what are called emergent volunteers, and these are people who they just want to come out and help. You know, if you hear there's a lost child, a lost person of any sort, really, people will come out of the woodwork basically.

There were 1,000 people a day coming to help search, and, you know, that's good because you can cover a great big area, but the field of search and rescue is a very disciplined field, and when you have search dogs who are looking for scents, you don't want to mess up the scent patterns.

And if you have potential tracks and clues, you don't want a lot of people who aren't trained, you know, potentially disturbing those clues.

CONAN: In the end, it was one of those untrained people, though, who found Robert Wood Jr.

KING: It was, indeed. In fact, they were harnessing this big labor pool. This person had actually showed up after they had taken all the volunteers they could take at that time. But he was so determined to go out there and look that he drove a car out to the spot where his instincts told him to go, and he just started walking into the woods.

And now this battlefield park is surrounded by a stone quarry, a large, industrial Martin-Marietta stone quarry, and this particular person was sort of operating along the border of the quarry and actually went onto the quarry property, and he saw a body lying on the ground and went to it, and sure enough, it was Robert Wood Jr., the 8-year-old boy who had been missing for five days.

And he was, you know, he was alive, and his vital signs were good. He had been - you know, he had ticks and chiggers and scratches all over him. He had, you know, suffered a great deal during those five days, but he was in good shape.

CONAN: Well, you're not being coy about not identifying this person; the person has refused to be identified, and messages are not even forwarded to him, and he's remained somebody who says he does not want any credit for his discovery.

So - but let's talk to somebody who was involved in that. Joining us now from a studio at University of Virginia in Charlottesville is Robert Koester, an instructor for the Virginia Department of Emergency Management, owner and CEO of DBS Productions, which specializes in search and rescue training. And it's good to have you with us today.

ROBERT KOESTER: Good to be here.

CONAN: And I want to ask you about other kinds of searches, as well, and I think probably more involve people with Alzheimer's these days than autistic children, but did the outcome of this, anything about the search for Robert Wood Jr. surprise you?

KOESTER: Well, if you're in search and rescue long enough, you learn nothing will really surprise you. We see people out there for sometimes week that survive, and we also see fatalities after just a few hours.

CONAN: So the outcome did not surprise you at all?

KOESTER: It's - you're always happy when you get a find after five days, but surprised? Really, really not really.

CONAN: I was interested, you've literally written the book on this. Half of all searches are concluded within three hours and 10 minutes, you write, an overdue hikers, having sprained her ankle, finally surfaces, or a hunter emerges from the woods after a prolonged search for a lost hound. This is from Dean King's article.

And there is in fact a profile of what happens in the cases of missing children.

KOESTER: Essentially for all the major categories you just listed - hikers, dementia or Alzheimer's, certainly autism - we have a category that helps searchers figure out what's planned, what's the characteristics of what they're most likely to do when they get lost.

CONAN: And Dean King, we'll let you go in a minute, but I wondered, what about Robert Koester's search bible, if you will, surprised you?

KING: Well, just how carefully he had categorized all the different types of searches that might occur and how detailed his statistics were and then how it had really changed search and rescue in the way that they analyze a case and go about, you know, starting a search.

CONAN: Well, Dean King, thanks very much for your time. I'm sure you've got much better things to do in France than speak with us.

KING: Thank you, Neal, pleasure to be here.

CONAN: Dean King, a writer for Outside magazine. His piece, "Catch Me If You Can," ran in the August issue. There's a link to it at our website. Go to npr.org. Click on TALK OF THE NATION. He's the author of "Skeletons on the Zahara" and joined us by smartphone from Crillon-le-Brave in France.

We're going to stay with Robert Koester. We hope you stay with us, too. If this is your story, as a family member or as a searcher, call us, 800-989-8255. Email us, talk@npr.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

(SOUNDBITE OF MUSIC)

CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. Earlier this month, a 28-year-old man with autism was rescued after three weeks alone in a remote desert. He said he hoped to walk 90-plus miles, from Boulder, Utah, to Page, Arizona. Police say he survived on river water and frogs and that he's lucky to be alive.

We're talking today about unique challenges of search and rescue in cases involving cognitive disabilities, those with autism or Alzheimer's who for any reason may have a tendency to wander. If you've played a part in this story, as a family member or as a searcher, give us a call. Our phone number is 800-989-8255. Email talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Our guest is Robert Koester, an instructor for the Virginia Department of Emergency Management. He wrote the book "Lost Person Behavior: A Search and Rescue Guide" on where to look for land, air and water. Let's see if we can go next to caller. This is Terry(ph), and Terry's on the line with us from Sag Harbor in New York.

TERRY: Good afternoon.

CONAN: Afternoon.

TERRY: So, I love your program, Neal.

CONAN: Thank you.

TERRY: And the story is about an Olympian who did an Olympian walk, my grandfather was in the 1906 and 1908 Olympics, and in 1964, he contracted Alzheimer's, and were his - my family were his guardians. We were in Hicksville, and we were given the task of keeping track of him.

And he wanted to take his 1956 Mercury and go to his house in Brooklyn. No, the keys were secreted, and it discouraged grandpa from driving. Well, one afternoon grandpa decided to walk. And we had no idea where he was. We were searching for him for five, six hours.

CONAN: Wait, wait, from Hicksville out on Long Island to Brooklyn?

TERRY: Yes. My father finally got this - no, he can't be. He called his father's house, and there he was, and he was crying on the telephone. He didn't know where he was, and he was in his own house. He had walked this 23.5 miles. I looked it up on the Google map. He used to walk. He worked in the courts in Brooklyn, and he used to walk to his house on 48th Street every day from work, and that's a 12-mile round trip. So he was used to walking.

CONAN: I guess so.

TERRY: But he at one point in 1905, he had a national record for the mile, and he ran 4:22, which was the fastest time in the world for that year. It wasn't a world record, but it was the fastest time anyone ran in the world that year. And he went to the '06 and the '08 Olympics.

As a matter of fact, I have a story in the Southampton Press out on Long Island this week about him and his...

CONAN: Send us a link to it, if you will.

TERRY: How's that?

CONAN: Send us a link to it, if you will.

TERRY: Yeah, how do I do that?

CONAN: Just email us, talk@npr.org. Put the link in there, we'll put it on the website.

TERRY: Oh, that's great, that's great. Yeah, yeah, and he died within a year or so. And I still am amazed when you look at a map that he did that in less than half a day.

CONAN: Well, glad he made it. Thanks very much for the phone call.

TERRY: Yeah, thanks again.

CONAN: Bye-bye, and Robert Koester, as you listen to that story, it seems to me that for people with dementia, Alzheimer's, the urge to return home is pretty powerful.

KOESTER: It's incredibly powerful. With Alzheimer's, people are usually what we call living in the past. And you have to go through an investigative process to just figure out how far in the past they are. And then with that sort of past map, you want to overlay that over their current condition, and you can use that to predict where they are.

We sort of have a saying with Alzheimer's: They go until they get stuck. And if he was able to follow roads, it's not too surprising he goes those considerable distances. Fortunately for us in search and rescue, 50 percent of the people with Alzheimer's are usually found within a half-mile.

CONAN: So the search, though, it would very different for a person with, for example, Alzheimer's than for a person - an autistic person.

KOESTER: Yes, the ranges, the distances you look, the investigative questions, and that's usually one of the underlying things. Well, Dean certainly talked about all my statistics, it all gets down to the individual. What makes that particular individual tick?

CONAN: Here's an email we have from Patrick in Laramie, Wyoming: Our son, who has Asperger's, was famous for disappearing in crowded places. All of his coats and jackets were bright orange, red or yellow. Once, as an adult, he disappeared during a picnic at Lake Harriet in Minneapolis. We desperately searched, and it dawned on us that three of us were using cell phones to coordinate the search, and the one person who didn't have one was our son.

He has one now, and so long as he has it with him, we can always find him. Well, joining us now by phone from Lackawanna, Pennsylvania, is Dr. James Harris. He's professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. Good of you to be with us today.

JAMES HARRIS: Oh, well, thank you very much.

CONAN: I just wanted to ask about - we're familiar again with people with dementia who wander off from their homes. Why are people with autism, like that person with Asperger's there, why are they likely to wander away?

HARRIS: Well, I think I should say first that this is a very serious problem for children with autism. The rates of death in children in this age group are actually increased because of the wandering. It's a major concern of the National Autism Association, and there's a website I think I should mention first called the AWAARE, A-W-A-A-R-E, Collaboration, AWAARE.org, that has extensive information for families.

So with that said, we have to understand that this is very different from Alzheimer's disease because these are children who have been a neurodevelopmental problem that involves the brain in its early development, particularly in terms of how they respond to sensory stimulation.

These children have particular problems in dealing with sounds and noises. For example, the child who was lost may very well have been sensitive to loud noises and sounds, and that may actually have made it more difficult to find him.

CONAN: The child who was lost in a mall.

HARRIS: Yeah, but the other thing, though, is that often the children run when they're attracted to something, like a merry-go-round for example, or water that they've played in. In fact, 90 percent of the children who wander who die or drown, and that's a major consideration. So they may be attracted to other things, they can't communicate their request, they may be over-stimulated, they may be easily distracted, and it's a particular problem.

Now in this case, the child was in a park. It was an unfamiliar place to him. And these children prefer to be in environments that are similar and have great deal of difficulty adjusting. For example, if you drive somewhere with a child with autism, they often will demand that you take exactly the same route every time.

So the changes of routines are important, and of course they become frightened, and when they are frightened, they run. I actually wouldn't say that this child was playing hide and seek. It was that he just didn't understand where he was, and he has a tendency to avoid when approached.

CONAN: Robert Koester, I also know that water was a major concern in the case of Robert Wood Jr., that - the North Anna is also a river, as well as a battlefield.

KOESTER: Yes, and we certainly already knew that a lot of people with autism are attracted to water, and a high percentage of them wind up drowning simply because they don't have that proper fear of the water. So that was some of the earliest tactics and was an area we searched throughout the entire search.

CONAN: Did you - are you among those who came to the conclusion that he was playing hide and seek?

KOESTER: I just prefer to use the term evasive, which is that he doesn't want to call out to searchers. And I try not to figure out if it's hide and seek or just fear of searchers or not wanting to respond. It's certainly something we see with a lot of autism cases, that sort of non-evasive - I mean, that evasive nature.

CONAN: Here's an email from Ken in Kansas City: We've had to search for our autistic daughter before. She's high-functioning and wandered away from home. She was found quickly, but it's no longer a worry for us thanks to Project Lifesaver. She's now Lojacked. She wears a radio frequency transmitter 24/7. If she would wander off again, all we need to do is contact the local police with the frequency, and they would be able to locate her in short order.

And Dr. Harris, is that one of the aspects that people are turning to now?

HARRIS: It is. I think the first thing to keep in mind is that supervision isn't really sufficient. One needs to make the home secure, the school environment secure. People use nanny cams. They use these various devices that are - can be used for tracking.

But particularly important is that each family have a family wandering emergency plan, where they actually have written down and shared with the school and the authorities what the child's behavior is like. Parents also need to talk to the schools about having wandering added to the child's individual education plan. This information, I think, is really particularly important that you need to be prepared.

CONAN: Let's go next to - this is Eric(ph), and Eric's on the line with us from McMinnville in Oregon.

ERIC: Hi. Thanks for putting me on.

CONAN: Sure.

ERIC: I'm a search and rescue member here in Yamhill County, and we have the benefit of using Mr. Koester's book. And we've had experiences before that book came out of looking for an Alzheimer's patient and it took over three days to locate her. Fast forward to his book coming out, and a SAR coordinator managed to direct the family to find an autistic child who was at a - in the fall, on his tricycle in a local stream, soaking wet and near exposure problems.

And we've also introduced over the last few years this Project Lifesaver. And what we do is we have a number of clients who have the tendency to wander, whether they're autistic kids or older folks with Alzheimer's. And we put one of these bracelets on them, and we can find them in short order. We've had a number of finds here in Yamhill County, and most of them - well, I'll say all of them have been - within under half an hour, and some of them within 15, 20 minutes.

CONAN: And you really use Robert Koester's book as a bible.

ERIC: Absolutely. Absolutely. On every search. It's the first thing we bring up.

CONAN: Mr. Koester, where did you find the data and decide to collect it?

KOESTER: I was actually - it was an international project where I contacted teams from all over the - actually, all over the world. Ten different countries contributed data, took a lot of legwork to collect all the data, and it's a pretty big spreadsheet where it all is. I always like to think of it - every lost person has a story, and it's our job to collect those stories. And by combining them all, it's lost people, actually, helping lost people get found.

CONAN: Eric, thanks very much for the call.

ERIC: Thank you.

CONAN: We're talking with Robert Koester. His book is called "Lost Person Behavior: A Search and Rescue Guide on Where to Look - For Land, Air and Water." Also with us is Dr. James Harris, director of the Developmental Neuropsychiatry program at the Johns Hopkins University School of Medicine, professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. You're listening to TALK OF THE NATION from NPR News.

And, Dr. Harris, I wanted to ask you. We were talking earlier about autistic children. Does this behavior change with age?

HARRIS: It continues with age very often, particularly for the groups that are nonverbal. So one needs to have a lifetime family alert plan, as I was saying. And I also would like to mention that Robert Koester's book is excellent, the "Lost Person Behavior" book. The section on autism is very accurate. And I think combining that with the link I mentioned earlier, the AWAARE.org Collaboration, one can get the information that you need.

But the other thing I'd like to mention quickly are the alerts. When children are lost, the family, when they call 9-1-1, should ask that an Amber Alert be placed. For older people with Alzheimer's disease, one asks for a Silver Alert. But these are alerts that put people in the system quickly. The Amber Alert doesn't simply apply to children who are abducted. But when you call in, you have to say your child has a cognitive deficit, and you would ask for these alerts to be issued. Mr. Koester may want to respond to that as well.

CONAN: Robert Koester?

KOESTER: Well, certainly every state is set up a little bit differently. But what is the critical component is that the dispatcher on the phone is immediately made aware of the fact that the child has a cognitive difficulty.

CONAN: Interestingly, you said every state is set up differently, and as we found out from Dean King's piece about the search for Robert Wood Jr. in Virginia, every locale is set up differently, too. You were very cautious about approaching the authorities, waiting to be asked. Finally, you went down there to, well, wait around for a while until you could speak with them.

KOESTER: Well, just like you said, every state is different. Every locality is difficult - I mean, not difficult.

CONAN: Can be difficult.

KOESTER: Can be difficult sometimes. Certainly as a trained searcher, we never go in uninvited. It will only be once we're formally requested because we don't want to cause sometimes the additional difficulties emergent volunteers cause, and it's just part of being a professional is you don't go until you're invited. Once I was requested, certainly people were very interested in hearing what I had to say, and the information was used.

CONAN: It all worked out. Let's see if we can get one more caller in. This is Marcia(ph), Marcia with us from Charlotte.

MARCIA: Hello.

CONAN: Hi.

MARCIA: Our family has two children with autism, and the older of those children is - he's 22 now, but he used to get out of our house on quite a regular basis. And we had - my husband was in the military, and we were living in Germany. And our second day in the country - and I didn't speak German - he got out of our house, and I found him in the next-door neighbor's house, and they didn't speak much English. So that was interesting, trying to communicate to them that I thought my son was in their house. Another time, we were at - on vacation at the beach in North Carolina, and Aaron decided that he wanted to go to the beach. And when we woke up in the morning at about 6 o'clock, he was gone.

We had even moved furniture in front of the door so that he couldn't get out, and he moved the furniture and still got out of the house. And we were able to find him before we had to call the authorities, but he was quite a long way down the beach, playing in the water, happy as a clam. And we were very grateful and relieved that we found him before a long and involved search had to happen. My comment is that these kinds of things happen every day in families with children with autism. Thankfully, they're not - they're usually found quickly and we don't have to call the authorities. And, actually, our son is 22 now and he's gotten better.

CONAN: Well, I'm glad to hear that.

MARCIA: He's decided he likes home better than outside.

(LAUGHTER)

CONAN: Thanks very much for the phone call. Our thanks again to Robert Koester and to Dr. James Harris. You're listening to TALK OF THE NATION from NPR News. Transcript provided by NPR, Copyright NPR.

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