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John's Missing: Autism, Wandering and Why We Need Action Now

BucknamManaging Editor's Note: For  information on wandering and an action tool kit called The Big Red Box, please visit National Autism Association's AWAARE program.

By Mark Bucknam

It was Tuesday, April 25, 2011, a beautiful warm spring morning in Potomac, Maryland, a suburb of Washington DC.   At John’s house, a radio alarm clock sounded at 5:45 a.m., softly delivering the news of the day, growing gradually louder.   John’s dad quickly silenced it, wanting to allow his wife another 15 minutes of sleep before her alarm signaled the start of her day.  Raising John, a moderately autistic adolescent, required a team effort by his parents.  John’s dad awoke first to prepare vitamin and dietary supplements that doctors believed John needed to compensate for deficits in his metabolism—deficits common among autistic children.  Mom would follow soon after, to make sure the kids were properly dressed and fed before getting on their respective school buses.

A few weeks from his 15th birthday, John had the functional intelligence of a boy half his age, but none of the emotional intelligence.  That was autism…or at least the manifestation of autism in John.  Every autistic person is different, though many share similar intellectual deficiencies, quirky behaviors, and most tellingly, social deficits.  They lack interpersonal skills. 

Like his older sister, John had bright blue eyes and red hair, though his was cut fairly short, hers was long and curly.  John was 5’8” tall, trim and solid at 140 pounds.  He usually slept well, but was full of nervous energy during his waking hours. 

It had not been a good night.  John had barged into his parent’s bedroom at 2:30 in the morning, fully awake.  His groggy parents teamed up to coax and cajole him back to his own bed.  His mom stayed with him a while, until he settled down and seemed ready to go back to sleep, before she headed back to her own bed.  John’s dad ventured downstairs to the first floor to check the lock on the refrigerator and the lock on the door from the den to the garage to make sure that they were locked —these were the two locked doors that the family used most often and most likely to be accidentally left unlocked. 

For John’s safety, everything had to be locked, either to keep him out of it—like the refrigerator, the kitchen pantry, the basement, and the guest bedroom—or to keep him from getting out of the house through it—like the front door, the patio doors, and the door from the den to the garage.  The locks were identical, excepting for the one on the front door.  They were all small combination locks with three rotary wheels containing numbers from 0-9 used to set the combination.  All of the locks were set for the same combination—a number that marked the month and day of John’s dad’s birthday. 

Downstairs early that Tuesday morning, John’s dad turned on the coffeemaker and a small TV, which quietly detailed world news.   He measured out John’s morning supplements – making sure not to confuse the morning batch of vitamins with those John would get in the afternoon, or the ones he would take just before bedtime.  By 6:00 a.m., John’s dad climbed back up the stairs and quietly slipped into John’s bedroom. 

John’s bed was empty. 

Unusual, but perhaps to be expected this morning, given John’s difficulty sleeping the night before.  His dad calmly began looking in the most likely places to find his enigmatic son.  Not in the bathroom.  Not on the couch in the den, where the family TV and John’s favorite videos sat silent.  John wasn’t in the living room or the dining room or the downstairs bathroom.  That exhausted the list.  Every other room in the house, the entrance to the basement, and all of the doors leading outside of the house were all locked.  As John’s dad completed the second sweep of the unlocked portions of the house, he began to get a sinking feeling.  John had begun to sprout up over the past year.  He had grown too big to fit inside the clothes drier, or under the bottom shelf of the linen closet—places where John would sometimes curl up when he was younger.  Now John’s dad began looking under John’s bed, in his sleeping sister’s bedroom and under her bed, behind the couch in the den, and behind the sofa in the living room. Still no John.

When John’s mom descended the stairs and went to the kitchen a little after 6:00 a.m., it took her a few moments to realize something was wrong with her husband’s pattern of behavior.  He wasn’t heading to the shower.  He was moving from room to room, searching for something, rechecking each place to make sure he hadn’t overlooked anything.

“John’s missing,” he said in a voice indicating bemusement more than worry.  The locks securing the exits from the house had been checked at 2:30, so John had to be somewhere inside the house.  But two sweeps of the unlocked spaces, and no John.  John’s mom joined in the search.

It wasn’t long before she spotted the combination lock on the door leading from the den to the garage hanging unlocked.  “Did you unlock this, this morning?,” she demanded.  Her husband stared in disbelief.  Sleepy as might have been, he was sure he hadn’t gone into the garage yet that morning.  Some mornings he needed to go there to retrieve his travel mug from his car, so he could fill it with coffee.  But not this morning.  He was sure of that.  Or almost sure.  Could he be sure?  He was absolutely sure that he had checked the lock visually three-and-a-half hours earlier, when John had woken his parents by barging into their bedroom.  He was absolutely sure of that.  He was nearly as certain that he hadn’t sleepily gone into the garage in the course of this morning’s routine.  And besides, to get to that door John would have had to walk through the kitchen, right past his dad—there was no way that anyone in the house had ventured downstairs or anywhere near the kitchen since John’s dad had come down stairs just 15 minutes earlier.  But there the lock hung, unlocked. 

As John had grown taller and smarter, he had been known to finger the locks from time to time, and once or twice he’d gotten lucky in unlocking a lock, after someone had lazily locked it by merely rotating one of the three tumblers just a digit or two away from the combination needed to unlock it.  It was the easy way to lock it—but equally easy to unlock it by reaching up, twisting the appropriate tumbler a click or two in the right direction and vois là, it’d pop open.  Staying a step ahead of John has always been a challenge, and as he grew, so did the challenge.

A quick check of the garage and John’s mom and dad relaxed a bit.  The garage doors were down.  That meant he was almost certainly still in the house.

On the rare occasions over the years when John found a door or backyard gate unlocked, he did nothing to cover his tracks.  He left doors standing wide open, and lights or TVs turned on in the rooms through which he’d transited.  As a result, his infrequent escapes were unfailingly brief, and with perhaps just two exceptions in nearly 15 years, he had never ventured further than a neighbor’s home or backyard before his adventure ended and he was returned safely home.  Once, when John and his family lived on a military base in Korea, he managed to disappear; and before anyone knew he was gone, he was found by a family friend a few hundred yards away at a Burger King, where there was a kids’ playground that John loved.  On a scarier occasion, just after John’s family moved to Fort Hamilton in Brooklyn New York, and before John’s dad had a chance to install locks to keep John inside the house, John, who had been “safely” sent to the locked basement, managed to climb on unpacked moving boxes, push open a small window and set off on a little adventure.  After a quick search, John’s panicked mom took a photograph of John to the post’s nearby front gate to inform security forces, to find out if they’d seen John, and to make sure they’d stop him from leaving the post.  While describing her plight, a call came across the security forces’ radio about a boy in the post’s convenience store, or shopette, who was helping himself to snacks, and was unresponsive to the employees’ attempts to speak with him.  John’s mom knew it had to be John and raced to the shopette—fortunately, the family’s new home, the post’s front gate, and the shopette were all within a couple of hundred yards of one another.  The Brooklyn home was soon locked-down like Fort Knox, with combination locks installed high on all doors through which John was not to pass—both interior doors and those leading outside.

Because of John’s wandering ways, when his family moved to Potomac, Maryland, his parents were able to enroll him in a Montgomery County Police program called Project Life Saver.  Designed to help locate missing people who could not take care of themselves—including primarily elderly people suffering from Alzheimer’s and children with autism—the program involved John’s wearing a radio tracking device on his ankle.  The battery to the tracking device had to be changed monthly, and John’s parents dutifully checked it every morning with a small match-book sized tester provided by the police.  That was part of the morning routine John’s dad was attempting to complete when he discovered that John was gone.  The small transmitter on John’s ankle could be tracked from a mile or so away at ground level, and could be tracked from about 3 miles away from a helicopter.  Because the signal could not be tracked from far away, it would be imperative to begin a search as soon as possible if John was ever found to be missing.

John liked music and each of the two cars in the garage had a little iPod Shuffle that John would listen to while riding in the back-passenger seat; but a thorough search of the garage, including the two cars, and still no John.  John knew which button to push to close the garage door from the outside, so the fact that the garage doors were closed was no guarantee that John hadn’t slipped out sometime in the early hours that Tuesday morning.  Indeed, John’s mom had heard John try the locked doorknob to his parents’ bedroom around 5:00 am.  The garage was on the opposite end of the house from his parents’ bedroom, so it’s unlikely they would have heard the garage door if John had opened and closed it.  It was now about 6:10 am…potentially an hour after John might have left the house.

The frightening realization that John could be outside and with a one-hour head start on anyone searching for him ratcheted his parent’s level of concern up about ten notches, and they quickly dialed 911 to activate Project Life Saver.  It had only been 10 minutes since John’s dad first saw John’s empty bed but more than an hour since John was last heard at his parent’s bedroom door.

Within a few minutes, Rockville police cars began pulling up in front of Johns’ home.  As the police attempted to understand the situation and join in the search, John’s parents anxiously enquired about their ability to marry up the Project Life Saver tracking equipment with a properly trained officer.  Tuesday morning turned out to be a good time to need police help, because for some reason there were 30 officers or cars available to respond, rather than the 15 that are typically on duty at other times.  Still, until a trained officer could be physically united with the radio tracking gear, there wasn’t much the police could do other than recheck Johns’ house and the surrounding neighborhood.

John’s dad was not the worrying sort.  He comforted himself in knowing that John was getting big, was physically fit, and was agile.  John had a natural fear of heights and had some sense of danger…even if he failed to recognize many potentially life threatening situations.  Moreover, John was a competent swimmer.  Tragically, it was almost a cliché that missing autistic children would be found drowned in nearby lakes, ponds, or pools.  Surely, thought John’s dad, John would be found in a neighbor’s backyard playing on a swing or a slide meant for much younger kids.

John’s mom’s mind ran on a different track, immediately jumping to the worst case possibilities.  What if he’d gotten into a car with a pedophile?  What if he didn’t think to swim because he wasn’t wearing his bathing suit—a possibility that is not as laughable as it might seem to a typical, non-autistic person. 

John could speak, but didn’t.  That is to say, he knew how to speak and had the vocabulary of a first or second grader, but he only used speech to communicate his demands or his needs.  He would not strike up a conversation, and would most often not respond even when spoken to directly.  One of John’s therapists had been working on teaching John to trust police officers and firefighters and to respond to questions about his name, address, and phone number.  But there was no way to know how he would respond outside of the familiar setting of his therapy sessions.  That Tuesday morning, John would demonstrate both the strengths and the limits of his ability to respond appropriately when approached by strangers and police officers trying to help him.

By 6:45, there were at least six squad cars in the cul-de-sac in front of John’s home.  All of the immediate neighbors had been informed that the police were there because John was missing.  Other neighbors out walking their dogs were also informed and given a description of the pajamas John was wearing when he went to bed the night before.  Trained officers with the Project Life Saver tracking equipment were en route or at the home to start searching.  Officer Laurie, Montgomery County’s supervisor for Project Life Saver and its biggest advocate, had called John’s home and spoken as comfortingly as she could to John’s mom and dad.  Officer Angie, who normally changed the battery in John’s radio transmitter, was on duty and on her way—or maybe she’d arrived by then.  A canine unit had arrived and gone over the standard questions and repeated the now familiar search of John’s house.  John’s older sister was sent to get on her school bus, as there was nothing she could do at home but worry, and her parents wanted to give her the impression that everything would be just fine.  John’s dad resigned himself to being as late for work as might be necessary—work seemed so unimportant under the circumstances.

Shortly before 7:00 am, news of John’s sighting came across the police radios.  He was seen at one of the county’s indoor swimming pools, nearly 4 miles from his home.  It was a pool John had been to many times in the 4 ½ years that his family had lived in the area.  In fact, he’d been there the week before, during spring break, as part of a day-camp that he’d attended.  The camp-group had traveled by Metro to and from the pool, but the nearest Metro station was 1 ½ miles from Johns’ home.  John’s dad was incredulous – had John walked there and hopped the turnstile at the Rockville Metro station?  Or had he jumped on a Metro bus?  Or had he walked the entire 4 miles from his home to the pool.  The possibilities all seemed so difficult to imagine, but then so was John’s quiet escape from his well secured home. 

Then came a phone call to the cell phone belonging to John’s mom.  Someone was with John, and John had given up the cell phone number that his school teachers and therapist had trained him to give in just such circumstances.  Absolutely amazing!  John had been trained and drilled for more than a year on it, but did he really get it?  Would he produce the right number if the need arose?  His parents and therapist could never be sure.  But when it really mattered, John did it.  John and whoever was calling were at the White Flint Metro station, a few blocks from the county pool.  John’s mom climbed into a police car and headed to the White Flint Metro station, while his dad stayed home by the phone.

It wasn’t too long—maybe half an hour—before the police car pulled into the driveway in front of John’s home.  John’s mom had called ahead to alert her husband that he needed to be ready to help with John, as John had been handcuffed for his own safety and had not been compliant in getting into the squad car.  Sometime between 7:00 and 8:00 am, the slim adolescent with his close-cropped red hair, still wearing his green pajamas, emerged from the back of a police car in handcuffs—it was a totally incongruous sight.  And one of the happiest sights his dad could remember ever seeing.  John seemed calm, and resigned to the fact that his morning adventure was at an end.  Because of his disability, there’s no telling what John was thinking or even how much John comprehended.  John’s mom and dad quickly determined to get him back to his normal routine by getting him dressed and to school—there would be no special treatment or positive reinforcement for the morning’s misbehavior. 

The neighbors were notified that John had been found, and John’s dad dashed off a quick text message to his daughter, John’s sister, letting her know everything was okay; she soon acknowledged the message.  The police were thanked for their rapid response and considerate, professional manner in dealing with the somewhat traumatized parents. 

Maybe the police had seen it all too many times before.  An autistic child or an Alzheimer patient gone missing.  Whatever the reason, they were calm and reassuring and seemed unfazed by the morning’s drama. 

For John’s parents, the morning of 25 April was the realization of a nightmare.  Something they’d work for more than a decade to prevent.  They’d flunked the test.  Their 14-year-old autistic boy had gotten past the security measures designed to keep him safely at home.  Additional barriers and alarms would need to be put in place.  The combinations to all of the locks would be changed within the next 24 hours, just in case John had actually learned the standard combination—rather than just getting lucky in fiddling with a lock left dangerously close to the combination.

In the days following John’s escapade, John’s dad installed an additional cipher lock with a dead-bolt on the door leading from the den to the garage.   Like the one on the front door, the new dead-bolt cipher-lock could easily be flipped open from the outside, but from the inside an 8-digit combination had to be punched before the door could be opened.  An ADT alarm system was installed in the home a week after John’s escape.  Most people buy alarms to alert them of intruders.  John’s family has one to alert them in case John manages to get past the locks meant to prevent his escape.  People with autism are especially uncomfortable with change, and soon after John came home from school on the day that the ADT alarm system was installed, he began tearing down the alarm sensors.  Until the sensors could be reinstalled, John’s parents decided the cars had to be parked outside, the motors to the garage-door-openers unplugged, and the garage doors mechanically locked shut.  It took a couple of weeks until John’s dad reinstalled the alarm sensors and rigged metal straps over them to prevent John’s removing them again.   On several occasions since then, John has been interrupted as he used a kitchen knife or a screw driver to remove a screw or two from the metal straps keeping the sensors in place.

John’s dad used to think it was a bit odd when on John’s birthday each year John’s mom would quip, “Well, I’ve kept him alive another year.”  This year, when John turned 15, it didn’t seem like such an odd thought at all.  Only this year, John’s parents didn’t do it alone.  If not for the intervention of some heroic good Samaritans, John might never have had a chance to celebrate his 15th birthday.

The first person to intervene and to begin the events leading to John’s safe return home was a county employee at the indoor swimming pool not far from the White Flint Metro station.  John was seen entering the women’s bathroom at the Aquatic Center, and when the employee went to investigate, John got spooked and ran away.  He was followed outside the building, but when the adolescent, clad in childish pajamas, failed to respond when called to, and then headed into the busy road adjacent to the pool, the Aquatic Center employees knew help was needed and called 911.  The news of the 911 call made it quickly to the police outside of John’s house.  It was the first definite news of John’s whereabouts, and he was over 4 miles from his home!  John was well beyond the range of any Project Life Saver tracking gear that might have been brought to his neighborhood.

On her way to work at 6:50 am, Denise spotted John in the busy road and knew instinctively that something was wrong and that help was needed.  She saw John go toward a nearby Marriott hotel and, neglecting her own concerns and morning routine, she parked her car in front of the hotel to follow John.  The hotel’s security director, Anthony, came to advise Denise that she could not park in front of the Marriott, but she was on a mission, and instead of moving her car she enlisted his help.  She told Anthony that she had already called 911 and that she was trying to assist the lost young man who had just gone by the hotel.

John soon bolted from the hotel premises and headed toward a dangerously busy major road—Rockville Pike.   Denise and Anthony trailed him and began working as a team to bring him to safety.  Luckily, John took the pedestrian underpass beneath Rockville Pike – a road that most competent adults would rather not cross day or night, much less at the start of rush hour. 

On the other side of the pike, John raced to the White Flint Metro station, jumped the turnstile and Wf_metro_station_001 headed up to the commuter train platform.  Denise and Anthony followed in hot pursuit, rapidly explaining the situation to a surprised Metro station attendant as they too blew past the turnstiles.

On the platform Denise approached John and introduced herself, trying to strike up a conversation.  She helped usher him away from the edge of the platform, away from the tracks.  As a train bound for downtown Washington DC approached, Denise calmly took hold of John’s arm and Anthony positioned himself to block John from getting on the train.   At nearly 15-years-old and 140 pounds, John was strong and wiry.  Heaven only knows what would have happened had he gotten on that train. 

Having failed at getting on a train, John headed back down toward the turnstiles, where Denise and Anthony managed to corner him by a tall fence consisting of metal bars.  Denise put her arms gently but securely on either side of John and grabbed onto the fence with both hands, effectively barring his escape.  Anthony asked John his phone number, and that’s when the hours of drilling in school and therapy paid off.  John spewed out the 10-digits he’d been made to repeat countless times, and Anthony entered them into his cell phone and soon found himself talking with an angst-ridden mother a few miles away.  John’s mom immediately informed the police, who relayed the news to the officers responding to the earlier 911 calls.  She was soon on her way toward the White Flint Metro.

The police were fast at getting to the White Flint Metro station, and concerned that John would bolt again or attempt to get on another train, the police handcuffed him for his own good.  Soon, John’s mom was on scene and helped the police coax John into the patrol car for the ride back home.

Back home, John’s mom was able to get John dressed and then drove him to school where all of the appropriate people were notified of John’s elopement.  John’s dad, after lingering briefly at the family home to thank the police, showered, shaved and headed off to work; on this particular day, his schedule helped to ensure that his tardiness would go unnoticed.  In the big scheme of things, it was as if nothing had happened. 

For the next several days the family was consumed in redoubling efforts to prevent any similar escapes.  John’s dad made a several phone calls to contact the people involved in helping John; that’s how the few available details of this story were pieced together.

This essay was written for all of the people who played a role in helping John get home safely that day.  Maybe the people involved—from the police, to the swimming pool attendant, to the woman on her way to work, to the hotel’s security director, to the Metro station attendant—all thought they were doing what any ordinary, responsible citizen would do.  Maybe they haven’t paused to reflect on the extraordinary fact that they may have helped to save a life that day.  It’s not every day that we have a chance to do something so extraordinary, and it isn’t everyone who instinctively recognizes what needs to be done and goes ahead and does the right thing, heedless of the inconvenience inflicted on oneself.

Without trying to criticize anyone, consider how many people encountered John—a gangly teenager dressed in kids’ pajamas wandering busy roads or riding the Metro by himself—during the hour or more it took him to travel the 4 miles from his home near Rockville to the swimming pool near White Flint?  To this day, it’s a mystery how he got there.  Did he walk the whole way, along and across so many busy roads?  Did he get on the Metro closer to home, jumping the turnstiles to get to and from the passenger platforms?  Did he climb aboard a Metro bus?  Judging by the blisters on his feet, it would seem that he probably walked the whole way.  Regardless of how John got to the county pool, dozens of morning commuters must have passed or encountered him without notifying the police. 

So this essay is for the police officers who responded so quickly, and those trained in Project Life Saver who sprang into action.  For the pool attendant who had the courage to call 911—having probably never dialed those three digits before.  For the Metro station attendant who exercised the judgment allowing strangers, purportedly trying to help some kid, to jump the turnstiles.  For the hotel security director, who abandoned his duties at the hotel and strayed several blocks in the company of a woman he’d never met to follow that instinct to help a child in obvious need of assistance, and for managing to get a phone number from him.  And most of all, for the woman who made herself late to work and embarked on a strange morning Odyssey because her instincts told her she was the someone who had to help a skinny young teenage boy—a complete stranger to her.  For teaming up with the security director to keep that boy from getting on a Metro train, and for physically blocking the boy with autism to keep him from running away from the Metro station. 

John could have easily ridden a Metro train into downtown Washington…, gotten killed on a busy street like so many deer in Montgomery County…, been abducted…, or hurt or even killed in an accident along the way.  Instead he was just a little late to school that day.  Did you know that just maybe you saved a life that day?  Thank you.

 

Comments

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God truly had his hand on John and your family!


I'm sure there were points in time throughout the whole year prior to this event--4months & a day, 7&1/2 months, 9months 2wks, 11months 5days-- some teacher, some therapist, even the parents, probably had the thought running thru their heads that this young man John would never be able to master this monotonous, basic but very important skill of knowing your own phone number which was repetively, relentlessly being taught/drilled into his repertoire of vital life skills. And even if after much hard work, and for the sake of simply responding to prompting he did actually follow directives to complete the task in that moment, I bet it was assumed that he'd unlikely use it effectively in the appropriate emergency situation. This well-written story has many lessons to give to us all, but the most crucial one in my opinion is this: Please, please, PLEASE let this be a reminder to NEVER, EVER GIVE UP ON TEACHING OUR KIDS ANYTHING!!! NO MATTER HOW HARD IT MAY SEEM OR HOW LONG IT MAY TAKE, CONTINUE PUSHING THEM TO REACH THEIR GOALS!!! Always believe in their potential, know their ability to surprise us, see their capability of doing the unexpected and consider the impossible ABSOLUTELY POSSIBLE!!!!!!!

What school did John attend?

Great testimony to the many heros and angels on Earth among us. My son, now 21 has eloped many times...our story is so similar. I too, am humbled by the fact that he has "survived" unscathed another year. The good news I must share is that the puberty years are the most difficult, and as many told me... once that settles down so does the impulsivity and need to run. I still don't trust that my son will not bolt, but the fear of every moment turning into a search and recovery mission has lessened. There is no way to describe the stress that a family goes through year after year living in lock down mode. Each action and thought must be carefully checked and rechecked. It is exhausting and frightening. However, these children as evidenced by your story are beautiful, perfect examples that there is still so much kindness, love and hope in the world!

Amazing! So many people so selflessly doing just the right thing at just the right time. A stunning example of how society ought to operate, of how we think it will operate when we choose to bring children onto this planet.
So glad John made it through this adventure safe from harm!

People (strangers) dropping everything and running (literally) to help out. Hard to put into words how much it means to see examples of that from time to time - reminders of the goodness in people. John, his family, all those responders, and the good Samaritans who went above and beyond, you guys are all rock stars.

John, you are the reason we keep fighting for the national attention we need in order to force our lawmakers to action. We only to keep you safe, from harm. We want for your parents and sister to have peace of mind. We don't feel it is too much to ask, so we continue onward into what seems like a ceaseless battle. God Bless you and your beautiful family, John. You have every right to happiness and safety. So we fight........

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