May 14, 2012 21 Share

Surviving the Wandering Nightmare


K9 police officer and dog next to cruiser.
iStockphoto

It is unthinkable. It is every parent’s worst fear. For a special needs parent or caretaker the mere thought of it can be crippling. You let your guard down for a moment. You turn your attention away from your loved one for an instant. He is gone.  

As a police officer, I have seen that desperate look in the eyes of a parent many times. As a K9 handler, I have felt the almost unbearable burden of having a family’s entire world resting on my shoulders. As an Autism Dad, I have also felt the knee-buckling terror of losing my child.  

For neurotypical families, the dangers of wandering start to subside as their children reach the age of 5 or 6 years old. For many special needs parents and caretakers, however, the dangers remain throughout the teenage years and, often, well into adulthood.  

The immediate actions taken by the caregiver of a wandering special needs individual are critical to the success or failure of the subsequent search. Unnecessary delays, inaccurate communication, or emotional paralysis can literally mean the difference between life and death. In this article, I will offer insights into the process of a missing persons search from the perspective of the police. I will also offer suggestions to more efficiently communicate with first responders and search personnel to maximize the chances for a successful outcome to our worst nightmare: a missing loved one with special needs.

For the purposes of this article, I will use the most typical wandering scenario:  an individual wandering from his own home. Obviously, true to its name, ASD encompasses a spectrum of functional, behavioral and emotional challenges. I can only speak generally and offer some thoughts that are relevant to the largest possible segment of our community. I freely acknowledge that a lot of this is easier said than done. I have made many of the mistakes that I will mention and I, of all people, should know better. Please understand, I am not here to judge and I do not claim to know it all.    

Time is the enemy 

It is human nature, once the realization hits you that your loved one is missing, to start looking for him. The emotional process seems to include inherent barriers of acknowledgment that take time to break through. You first begin searching by yourself.  Anywhere between two minutes (an eternity when your loved one is missing) and 10 minutes into your search you may think to enlist the help of your spouse, other children and members of your immediate family. Panic sets in and logical thinking becomes difficult. You check and recheck areas of your home and yard. Your search is random and inefficient. Then your imagination starts to run away. To be blunt: You are flailing much like a swimmer in a riptide. But the swimmer who gains control of his emotions and begins to think rationally is more likely to survive the ordeal.  

Keep in mind that it is quite common to locate a “missing” special needs individual inside their home. Often they crawl into or under a bed, into a closet or behind furniture. They may be embarrassed, spiteful or scared. Sometimes they fall asleep, oblivious to the chaos around them. I have been involved with several large-scale missing persons searches that ended with a radio transmission advising the individual was found asleep in their room. Rule out this possibility quickly and efficiently, then ... 

Call the Police! 

I have been dispatched to searches HOURS old. I have seen families canvass neighborhoods on foot and in cars for hours, in full panic mode, before it occurs to them to report the matter to their police department. For some, a sense of embarrassment and failure as parents demands that they keep the matter private. For others, a fear of some legal ramification delays their action. For others still, it simply does not enter into their minds. When I briefly lost my son in a shopping mall a few years ago, I remember dreading the embarrassment among my peers. “I’m a cop. I don’t lose my kid.” I’m ashamed that emotion even entered my mind, but it is what it is. We are all human.  

There are many reasons why delay at this stage is dangerous. Obviously, the longer the individual is missing the higher the chances he will encounter danger. As time increases, so does the distance he can travel. Daylight is precious in search work and must be treated as such. 

Police tracking dogs are trained to smell and follow human scent. Although some police dogs, such as bloodhounds and some patrol dogs, can be trained for scent discrimination (ignoring all scents except the one presented to them through a scent article such as a worn shirt or hat), most are trained to track the freshest scent available to them. If a K9 officer brings his partner to your backyard and commands him to “track,” who will he be tracking—your missing loved one or you and your family who walked around the yard countless times before calling the police? 

Police, Fire and EMS departments have a vast array of resources and experience to bring to the table. The most valuable, however, is manpower. We are not coming to judge you and your family. We are here to help you. CALL US RIGHT AWAY.  

Keep It Together 

The minutes that pass as you wait for the police to arrive will be the longest of your life. It is unrealistic and unreasonable for me to suggest that you just sit and wait. Of course, you are going to keep looking for your loved one. But understand that the police will need quite a bit of information about you and your loved one when they arrive and you will be in no mood and no frame of mind to sit and provide this information when someone you love is missing. It will prove invaluable if you can prepare a lot of this information before hand and have it ready in case of such an emergency. Early in my K9 career I was given this Wanderer’s Information Sheet. It is designed to cover Dementia patients as well as people with ASD. Just compete what is relevant. I suggest filling it out with as much detail as possible and stashing several copies in your home, your car, and with your extended family.  

Know Your Loved One 

A lot of the information on the Wanderer’s Information Sheet is straightforward, identifying information for your loved one. Some of it, however, is not as intuitive and may not occur to the responding police officer to ask, unless he/she is experienced with ASD and missing persons searches. Offering this information will expedite the process.  

Below is a list of questions you should not only be prepared to answer about your loved one, but prepared to proactively offer to the police (Don’t assume the responding officer will think to ask these questions): 

  • Is he dressed appropriately for the weather? 
  • Will he keep clothing on appropriately (My son is notorious for taking his shoes off whenever he gets the opportunity)? 
  • Does he understand DANGER (water, traffic, heights, strangers)? 
  • Would he know to dial 911 or seek help if in danger? 
  • Does he fear strangers? The police? 
  • What was his mindset before wandering?  Was he being disciplined? 
  • Does he think he will be in trouble when he is found? 
  • What excites him or catches his eye (water, movement, colors, sounds)? 
  • Is he drawn to animals such as dogs? 
  • Is he repulsed by any sights, sounds, smells, etc.? 
  • Does he have a typical concept of warm and cold (would he seek shelter if cold and wet)? 
  • Would he respond to the following questions?  What if they were asked in a way not familiar to him? 

1.    ”Where do you live” (as opposed to “What is your address?”) 

2.    ”What’s your name?” 

3.    ”Where are your mom and dad?” 

4.    ”What is your phone number”? 

5.    ”Are you OK?” 

6.     ”Do you need help?” 

  • Will he answer to his name if called by a stranger?  What if it is phrased differently? (My son will not always answer if we yell, “Eric?”  But he will almost always reply if we yell, “Eric, where are you?” and will reply 100% of the time if we yell, “Eric, say ‘yeah’”). 
  • Does he make any idiosyncratic noises (My son makes a distinct “EEEEE” sound when he gets excited)? 

Be Proactive 

I think it’s very useful to proactively visit your local police, fire and EMS departments and introduce your loved one to as many officers as possible. This will serve a couple purposes: First, it will hopefully dampen any fears he has toward these officers. In addition, it will allow the officers to interact with you and your loved one and get a feel for his behavior and abilities. Remember, this may be the officers’ first experience with an individual on the autism spectrum.  

It is also critical that you have easily accessible and up-to-date pictures of your loved one. You should keep both printed pictures and digital copies (saved on a flash drive) to ease the distribution to search personnel and the press if necessary.  

Be Prepared 

The police will quickly establish a command post, probably in your home or close by. It is imperative that at least one family member remain at the command post to answer questions as they arise and maintain contact with friends, family, neighbors, etc.  

An Incident Commander will be named. He/she will probably be a ranking police, fire or EMS officer. He/she will be responsible for coordinating the search effort and keeping track of the areas that have been and need to be searched. If family members and friends are assisting in the search effort, it is imperative that they coordinate and maintain contact with the Incident Commander in order to avoid redundantly searching some areas and mistakenly missing other areas. As time progresses the search will grow larger in terms of area to be covered and personnel and equipment involved. 

Prepare yourself for an extremely phrenetic and chaotic scene. There may be rescue vehicles, legions of volunteers, even helicopters circling your home. It will overwhelm you if you let it. The Search and Rescue personnel should understand that the presence of so many vehicles and people around your home may very well frighten your loved one away if he makes his way back to the area. Don’t be afraid to mention that possibility and request that noise, emergency lights and extraneous personnel be moved from your property if at all possible. 

Remember, we all get scared. It is a natural human emotion. Accept it and acknowledge it. But do not let it cripple you. There will be an army of volunteers ready to help you. Stay strong for your loved one and keep your composure. You are stronger than you think. 

It pray that you never have to personally use this information. But I also pray that, if the unthinkable happens, this will help in some small way. 



Comment Options

Linda Murphy (not verified)

I haven't experienced this yet, Thank the Lord Jesus

I have a backup plan for this, since the school my son attends is so lazy and has nothing in case he does run or wander off. I have smart911, I am getting him a dog tag shaped medical alert necklace, he is registered with project lifesaver, and I am about to buy him a guardian angel gps from amazon. We never know what our children are going to do, and we never know when it is going to happen, so we need to be prepared ahead of time.

Anonymous

Learn to swim or float

People with autism need to learn how to swim or float. The earlier the better. Whether or not you think they are elopers.  It is a good thing for typical people but essential for people with ASD since, for some as yet unknown reason, so many of these elopment tragedies end badly in creeks, lakes, ponds, swimming pools, etc.  www.autismsafetyproject.org 

Anonymous

Angels

Have lost my DS/ASD non verbal severely disabled son many a time. Never underestimate the power of the angels looking after our children, my son's is run ragged - lol! But...he has always been found safe :-) The last time he even managed a bit of 'shop lifting' of things he liked the look of in the shopping centre!

Anonymous

Thank you

I loved the part where you knew how to get your son to respond. My son's name is Justice he is geting better at answering it but if I call out the door or in a store "Marco" he will 100% of the time answer back "Polo". I don't know what ever started this but it works and I love it. I have also looked into GPS type locators if he wanders to far it will sound an alarm. 

Anonymous

Thank you

I just read this article and am printing out the information sheet now. My son is a wanderer. Just the other day he got out of the house while I was in the bathroom. When I realized he was gone I freaked out. Luckily I found him down the street but it could have been really bad. He has no sense of danger. Having this information sheet handy could really help if it happens again.

Anonymous

Thank you for this great

Thank you for this great piece of advice. Children with ASD have no concept of danger and I think that's the major worry. 

Anonymous

Thank you for guiding parents

Thank you for guiding parents of children with ASD.   I have 'lost' my little guy several times beginning at age 3.   All but one time, I found him in the house.   He was 3 the day he unlocked the deadbolt and exited through the garage door (which I thought was down).  This was the scariest day of my life.   Thankfully I always check on him if more than a couple of minutes go by that I don't hear something going on.   I have baby monitors in the rooms he plays in that are out of sight.   I didn't hear him so I went to check and he was gone.   By the grace of God, I immediately ran out the front door as I knew the street was the most dangerous immediate place for him.   He was already 2 blockes away running down the middle of the street in nothing but a diaper.   There was an elderly gentleman driving in reverse corralling him to the side.  What was so scary was that he has no concept of danger and if something would have drawn his attention on the other side of the street, he would have dashed directly behind the car and been run over.   I shook for hours with the fear of what could have happened.   He has now discovered a pool in our neighbors yard and we are struggling with ways to prevent him from climbing the fence to get into the pool...... And, just all other parents, I will have many other stories.   Thank you for the insight.....suggestions and support :)

Anonymous

Grateful mother

I can't thank you enough for this life saving and priceless information.  My son is severely effected by Autism and gets away a lot inspite of all our efforts and safety measures.  There have been a few times he has gotten completely away to the point of needing to call for help in order to find him and I was an emotional wreck trying desperately to answer questions and not panic at the same time.      Especially the time a maintenance man let him escape our apartment while I was waiting in the back room for him to bring his tool.  It was winter and snow and ice were outside and my son had stripped down to his pull-up.  I found out within a minute, but without the maitnenance man's help (or anyone else's for that matter) I was fighting a up-hill battle against time and weather and my own panicking emotions.      Thankfully, my son did get found and was alright after getting warmed up but I would have given a lot to have these tips and suggestions in my "tool box" so to speak when that happened.  I will definitely be saving them for future reference because sadly, I will most likely need them desperately at some point.  We are actually trying to get my son a service dog too in attempts to help ease this danger area for him.    Thank-you so much for what you do (I follow you on facebook as well) and for this article here too.  May God bless you and your family.           Cindi         www.DogForDavid.com             www.facebook.com/DogForDavidcom 

Anonymous

autism.

hello everybody my name is sara and i am an adult with autism, i now run my own autistic spectrum condition group facebook, which can now be acccessed. i am also chair of my local autism partnership board here in grimsby north east lincolnshire being a passionate advocate for all those on the autistic spectrum. i recently won an award [through humberside fire and rescue service grimsby north east lincolnshire] for our voluntry autism awareness training work we do as above. raising awareness of autism across all relevant emergency services and training them up on autism, there is still along way to go to meeting the governments requirements on meeting the needs of all those on the autistic spectrum, i love the work i do around autism, as i have been at it for a long long time. making change in a posotive constructive way.

Anonymous
Anonymous

Excellent Article

My five year old autistic son, Mason Medlam, wandered and died.  He was missing for seventeen minutes, fourteen of those with fire, ems, and police surrounding him, before I pulled him out of the water.  He died two days later.This article is excellent.  Never hesitate to call the police, know your surroundings and use technology to help you.  Be aware that wandering and autism go hand in hand.  92% of autistic children wander.  The leading cause of death among autistic children that wander is drowning.You don't want to live my life.  Life without Mason is horrific, devestating and nothing I would wish on any of you.  Learn from the mistakes that I made.  I didn't know what wandering is.  I didn't know it could kill my son.  I didn't know that it was a symptom of autism.  You do.  I pray all your children are safe, healthy and live long, long lives.Sheila Medlam

Anonymous

Thank you

I thank you for sharing your story, I am also so very sorry for your loss. I will take it to heart and remember it so that I can prevent my own son from wandering. he does it now and hes 3..

Anonymous

So sorry for your loss Sheila

So sorry for your loss Sheila :(  Prayers to you and your family.

Anonymous

My son is a wanderer. He has

My son is a wanderer. He has wandered off from school as well as my home. I do call the police and enlist the help of friends and family. The last time I ever called the police I was told by the responding office that if I call one more time they will refer my case to the county attorney and I will be investigated for neglect. I no longer call the police. I live in a small town. There is very little tolerance here and a huge lack of people interested in learning about autism. I know I need to move and eventually I will but I have a home here and I really don't want to start over.

Anonymous

Reader Suggestion

Find a police or fire dept in your area that has joined Project Lifesaver and get you loved ones tagged. if non exist become proavctive to get one of them to join. My experience is that when they become aware of its existence they jump in and adopt. See projectlifesaver.org

Anonymous

hi

interesting to read that your son also does the eeeeeee when he gets excited!<3

Anonymous

Great Advise

Thanks so much for sharing this. Im sure we even here in Australia will benefit from your experience and knowledge Renee

Anonymous

Thank you for this article. 

Thank you for this article.  My husband is a police officer too, and we have been through the panic of losing our son.  To be proactive, we had contacted our local police department and had our home flagged in the 911 data base.  We gave the pertinent information about our son if we would ever have to call in this situation.  They knew ahead of time to not use lights or sirens, and gave a list of questions he would answer.  "Do you want to go to Disney World?"  always gets a yes, and he will come running.  The number one cause of accidental death for children with autism is water, so we have maps printed for first responders with the waterways highlighted from our home to help first responders organize their search.  We also regularly call dispatch and invite police on patrol to stop by whenever possible.  There are non emergency lines to reach dispatch which we use.  We let police know that if they get a call, this might just be the child with autism they are looking for.  Our family rule is after a search of the house, we call 911 immediately.  We would rather apologize later!  Excellent advice on calling quickly. 

Anonymous

AA16 article

Well written - good advice- helpful hints.  Will forward to others.

Anonymous

thank you for sharing this

Thank you for sharing this information. I am new to this gig of special needs parenting (3 yr old apraxic daughter - almost completely non verbal) and this scares me to death if I ever lost her I know she would be unable to tell them any type of information to find us. We also have a great grandmother in the family who has beginning dementia and is a "walker"/wanderer. Thank you so much! will be sharing with my community

Anonymous

Thank You

We as parents do go into panic mode when our asd child wanders off. this is a valuable resource and tool. i am forwarding it to all the groups i am connected with.