Wandering Autistic Children – Fact Is…Other Special Needs Children Are at Risk Too

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There are SO many reasons why we need to consciously strive to care for wandering autistic children.  It goes without saying that this behavior is dangerous and our vigilance will save our young’s one’s life if they are prone to wandering.  It is important to acknowledge that autistic kids are not the only ‘special needs’ young people that may wander.  For instance, young people who are diagnosed with Down’s Syndrome are also prone to wandering.  Now, let me say, this is personal because my very own precious and precocious granddaughter has told me she doesn’t like school and will just leave, leave for the carousel.  There is no carousel at school. She is a flight risk, to be sure.

Look, let’s be frank here, if one of our special needs children is alone he or she is vulnerable.   Being away from a loving care-taker means they could become totally lost and someone of ill-intent finding them would harm them, abuse them or worse. Fairly recently this very thing happened here in the United States, an autistic girl lost at night, afraid of the dark accepted a ride from a man who raped her.  I know this is hard to hear, but its a fact.  If that isn’t bad enough they could be  hit by a vehicle, or die drowning.

These are horrific outcomes and I know you want to do all you can to be in prevention mode so that our loved ones are protected.

Sadly, Children Are More Vulnerable Today Than Ever

Sadly, Children Are More Vulnerable Today Than Ever

Exhausting?  YUP!

This is an exhausting challenge, keeping tabs on our precious loved ones because they could just get it into their little head to respond to that ‘bee under their bonnet’ and go do something or to, heaven forbid, escape something that for them is not comfortable.  Because of the gravity of this issue there have been many studies conducted and there is a plethora of information and tools we can access for support.  Many of these take the work out of establishing records and communication with others regarding this alarming possibility in our lives.  There are GPS locators, special ID tags, communication packets for use with emergency responders, and of course special notices that can be deployed like the Amber Alert.  I will offer suggestions on some of these resources toward the end of today’s blog.

What the Research is Saying.

A study released October 8, 2012 made several significant points that are worth our time to review.  One that jumped off of the page for me is this quote taken from the Pediatrics article that summarized this study.

“Nearly half of children with ASD were reported to engage in elopement behavior, with a substantial number at risk for bodily harm. These results highlight the urgent need to develop interventions to reduce the risk of elopement, to support families coping with this issue, and to train child care professionals, educators, and first responders who are often involved when elopements occur.” Pediatrics 2012;130:870–877

Schloss_Schoenhausen_Children_Sculpture_fullres

If you would like to read more, here is a reference link to the article written by Autism Speaks science writer Laurie Tarkan regarding the study’s results.
https://www.autismspeaks.org/science/science-news/study-confirms-autism-wandering-common-scary

Too Close For Comfort

Years ago my granddaughter, who has four diagnosis now the first one starting out from school as having global developmental delays, did the following and there are no words to describe the terror I felt when I couldn’t find her.

  1. Left our home through the garage when it was left open by teens leaving the home. She had just learned to walk and was found wandering down the center of a busy neighborhood street where people do not drive the speed limit. It scared me to death and I went through my house changing door handles from lever to knobs and putting safety covers over them among other things, like a gate on the garage door access from the house.
  2. Shoe shopping with her older sister and in what felt like a split second, she had bolted away in Sears. She was found outside of the store approaching the escalator.

    Busy Shopping Centers Shouldn't Be the Source of Nighmares

    Busy Shopping Centers Shouldn’t Be the Source of Nightmares

  3. Getting out of our car at Barnes and Noble and while grabbing my purse she bolted in a parking lot. What was she focused on and heading for I still have no clue. She just bolted.
  4. Shopping with her sister and two cousins at Walmart, the girls were looking through the clothing racks and she just disappeared. They wanted to have their baby cousin with them and I was adamant you have to keep your hands on her. Well, we couldn’t find her for what felt like forever, even with the store putting the floor attendants on notice. I stood between the two exits frantically watching in case she made it to the front of the store or if a stranger had her with them and was leaving. I have never felt more frightened, more helpless.

If you are raising a child on the spectrum you know that this doesn’t just go away.  There are many young people and young adults who still wander. Depending on the severity of their diagnosis and how well they are doing with social skills and language skills this will continue to be a significant concern, maybe for a very long, long time.

Now…Wait a Minute, Isn’t This Just Poor Parenting?

When an autistic child wanders or elopes it is not about them being disobedient or about us being negligent or inattentive.  The above-referenced study made the point that in the over 1,218 ASD children between the ages of 4 and 7, 46% wandered compared to only 11% of normally developing children.  And in the age bracket 8 through 11 that statistic dropped to 1% for normally developing children compared to 27% of the ASD kids.  This is a tale-telling comparison and emphasizes the distinction and gravity for children who are not developing normally.

Dangerous Behavior

Even the Most Deligent Parent Can Be Shocked with a Wandering Event. Its not negligence or lack of attentiveness.

Even the Most Diligent Parent Can Be Shocked with a Wandering Event.  It’s not negligence or lack of attentiveness.

This is such an important subject involving a potentially heart-breaking outcome that it absolutely requires our positive parent interventions.  In my previous post on preventing drowning one of the alarming statistics is that 91% of childhood drowning deaths were autistic children who wandered away from their place of safety.  The other alarming statistics involve traffic fatalities of a wandering child.

Is your heart not aching for the families who have suffered in this way?  

I can tell you that these few events of mine occurred while I was making EVERY effort to be vigilant with regard to my “hands on” her and under a watchful eye absolutely ALL of the time.  Talk about tiring!  My observation has been that my ‘vigilance’ looks different from the vigilance of her other family members and indeed even some care-takers.

You couple her penchant for wandering with the fact that she has zero cognitive understanding of ‘stranger danger’ and oh my goodness, how disconcerting is that?  She only needs to talk with you, then you are her friend.  Teaching her the concept that not everyone is a friend continues to be a frequent lesson in the span of a day’s activities.

Being proactive is an important choice we make.  But to be effective we need to clearly define elopement and define wandering. While they are similar in scope and the outcome is the same, the trigger is different.  Understanding the differences will help us establish an effective action plan.  Running from something uncomfortable or running to something they like?  Knowing is the foundation to addressing this alarming behavior that poses such danger to their welfare.

WANDERING: The act of just leaving to explore or leaving the safety of a responsible person’s care or the safety of a classroom without permission to just GET something or DO something. They could be going off because they want to explore something of interest, are drawn to water, or the sound of a passing fire truck. It could mean they need or want to GET something or prefer to BE somewhere in particular.

ELOPEMENT: The act of running off from adults at school or in the community in order to ESCAPE something or somewhere that has become uncomfortable and therefore not preferred. It may be something emotionally uncomfortable such as a difficult exchange or expectation, loud noise, confrontational circumstances that sort of thing.

Let’s talk resources now.

  1. Take the time from ALL that you do to develop a family Wandering Emergency Plan (FWEP).  Your FWEP will serve as a tool to engage emergency services in the most time-efficient and effective way.  It contains a list of items that should be a matter of record regarding your special person like birth marks, words they respond to, sounds that alarm them, places they are drawn to, contact persons and the like.  Make copies of these and as they say, “get ‘er done”, then pass them out:  http://awaare.nationalautismassociation.org/wp-content/uploads/2014/07/FWEP.pdf
  2. Now, this next thing is a powerful tool! It is provided by AWAARE within the National Autism Association and called the Big Red Safety Toolkit    http://nationalautismassociation.org/docs/BigRedSafetyToolkit.pdf   This has many elements to it and will take some time to fill out.  You will immediately see how much this tool’s contents are going to powerfully assist you and your family should a wandering incident occur.
  3. Wandering puts our loved ones in harm’s way.  The CDC recognizes that gaining a better understanding of this unsafe behavior is VERY important.  So they have adjusted the coding a medical professional will do when you come in for your doctor visits.  Having these concerns recorded will help facilitate better research and resources being available to us as time goes on.  Read about it here: http://www.cdc.gov/ncbddd/autism/code.html  And see the changes here: ICD-9-CM code for wandering  
  4. This educational tool of the NAA (National Autism Association) is a good way to get the word out to others in your circle or community who may not understand wandering and its dangers.  It contains many reasonable safety and prevention tips, a list of resources within the Autism community, and an effective checklist of things to do and think about. The brochure can be downloaded here:  http://awaare.nationalautismassociation.org/wp-content/uploads/2014/07/wanderingbrochure.pdf
  5. Locating a child or young person who has wandered/eloped is a heart-rending exercise.  Many stories end up well, but all too many tragically do not.  So…you may want to consider a locating device that can be a part of your loved ones dressing routine and like a pair of pants will be worn.  Here are two examples I have researched.

A global positioning device could make all the difference.  These are services that you spend for monthly.  Read about two of them here.
http://www.locationbasedgps.com/categories/Autism/
http://www.locationbasedgps.com/traxxit360-tracking-solution/

LoJack is another such system that you may want to look into.
http://www.lojack.com/People-at-Risk

But, remember this… these devices are NOT the final solution.  They are not going to work all of the time.  There could be satellite interference, or loss of signal because of buildings or topography high and lows, or the signal could be weak.  It is VERY important to remember this is one component of a comprehensive safety plan.

I like to think of this as being the layers of an onion, you lay in the layers of protection and therefore create redundancy in your safety plan.

This Company's Ingenious Idea is Well Worth the Money

This Company’s Ingenious Idea is Well Worth the Money

6.   The Keep Me Safe ID uses the technology of the QR code.  This device is not horribly expensive and I think it is  ingenious and absolutely a great addition to your proactive safety actions.   And BONUS, no monthly service fee.

One Example of Their Product - a wrist band.

One Example of Their Product – a wrist band.

The company will have you fill out a form with the information you want in the record and then it gets encoded into your own specific QR code.  Of course, you know that anyone can read the code with their smart-phone app making it a good communication link.  The other features are well thought out and valuable.  Check this one out for sure and watch the attached video about it here. I think it’s a GREAT idea and wonderful resource.  http://keep-me-safe-ids.myshopify.com/pages/about-us

What is an Amber Alert?  Shawn knows!

We should know why kids do this!  Understanding what we can do to prevent wandering and elopement, where we can get resources AND who can help is part of our job as parents of our very special people.

I want to introduce you to an additional resource, a firefighter, Shawn Martin, who is making and taking proactive strides in helping families prepare for disasters.  He has also composed information for special needs folks.  His website, Disaster Preparedness Made Simple (http://disasterpreparednessmadesimple.com/) emphasizes the importance of how to plan, prepare, and practice for disasters. We can all agree that a wandering event would be a family disaster, right?  Because of his emergency management background and vast experience in that field he is going to share with you how the Amber and Silver Alert system could serve our needs should ever this scary event occur in our lives.  Stay Tuned and Check Back for this important information.

And of course, I hope you have seen my reference to the organization, Firefighters Vs Autism (firefightersvsautism.org).  I included their information in my post on How To Protect Autistic Children From Drowning.  They are another great resource that you can tap into for information.  Their mission is to get the word out about wandering hazards and to train emergency responders and other community resources so that they can effectively respond when someone on the autism spectrum turns up missing.

So, I’m hoping you will find something here that will help you in your efforts.  Cover your base!  This true life situation need not become a tragedy in your life or the life of your loved ones.  I believe this is urgent.  So we are just going to have to make time to develop our safety net and deploy it under our loved one.  Layer in as many tools as you feel are attainable and reasonable for your circumstances.  And rest better at night knowing you have done your best!

Nothing is more heart-breaking than the loss of a child. This need not be an outcome for you and your family. My heart goes out to you…I know how busy you can be and get.  I’m in your cheering section, for sure!!!  

Do Let Me Know How I Can Help.

Children_in_the_Aquarium_La_Rochelle_-_Dream_of_Sharkfullres Lidice_Memorial_-_Memorial_to_Child_Victims_of_War_-_By_Marie_Uchytilova_-_Near_Prague_-_Czech_Republic_-_03 Childrens_Museum_of_Manhattan_1024px212_W83_jeh

Whether we are exploring an aquarium, shopping in a busy mall, or visiting a museum, we want to do so knowing that our loved one will be safe.  We want to be assured that they will not wander from their school because the work is too hard or because they have been bullied.  With all sincerity I  hope you will NEVER face such a difficult life experience!

If you have a story, we will all benefit if you are able to share it with us.  I would love to hear from you.  Your comments and suggestions are most appreciated, too.

Drop Us a Comment! Or Share Your Story. We Will All Benefit From Your Generosity.

Drop Us a Comment! Or Share Your Story. We Will All Benefit From Your Generosity.

 

10 Responses to “Wandering Autistic Children – Fact Is…Other Special Needs Children Are at Risk Too

  • Hi Linda, a very comprehensive article on a sometimes heartbreaking problem. Many parents (me and my wife included) experience children lost and they are not necessarily always autistic. Whenever it happens you will have an almost traumatic experience, but the relieve is so great when you get them back unharmed. I am glad that there are so many ways to help preventing these enormous issues. Cheers, Jerry

    • admin

      Hi Jerry, Thank you for dropping in and sharing your thoughts. I am glad you found my post to be comprehensive.

      It is so true that this does not apply to just autistic children. While other special needs kids also get caught up in wandering behaviors, children who are developing normally of course also wander and get lost. The good news is that for these kids, as they grow older, the statistics show they are less prone to wandering and therefore getting lost.

      You certainly have it right that when our child is found unharmed, we parents are so thankful. And yes there is a profound relief, to be sure.

      I hope you and your family always stay safe. I appreciate your valuable time and leaving a comment today.

  • I don’t have a special needs child. But the other day at church my two year old went outside next to my husband and I thought my husband saw him. There was a crowd of people leaving church and he must have gotten mixed up in the traffic of people. But then we’d lost him. So we both circled the church in opposite directions and finally found my boy where he’d just wandered to, scaring us to death practically. Do you have recommendations on how to teach our children to NOT wander off?

    • Linda

      Hello Sarah,

      Yes it is true that when a child, any child is away from out watchful eyes, it can indeed scare us to death.

      You asked if I had any recommendations on how to teach our children to NOT wander off. First, just remember that as they grow older this potential greatly lessens in normally developing kiddos.

      In the meantime, we need to strike a balance in teaching them the concept of “stranger danger” with the possible fear that can create. But I expect you have already started to have that discussion. I’m not sure how old your son is so that makes giving you some recommendations a little more difficult, because I don’t know if he is talking yet, and that sort of thing.

      Nevertheless, I believe that role-playing is the absolute most effective way in helping our children. You can set up a scenario and role-play out what would be the best thing to do if somehow they become separated from us. Teaching them to sit down and not go off looking for us is a good first action. The further they wander the further into harms way they could get. Develop several scenarios and practice them, just as you would a fire-drill in your house.

      Finding age appropriate materials to illustrate what we are saying is a good addition. You can even draw up what you want to communicate and if your son is coloring sit and talk and color the steps to follow.

      Here is a child-friendly site that has several safety subject that can provide some resources.

      http://www.safety4kids.com.au/safety-zone/stranger

      I hope you have found this helpful.

      Linda

  • Hi Linda
    My son has grown up with a developmental disorder. It means that he goes to a special school for children who have roughly the same disorders.
    He is not actually autistic.
    But with some features which in his early childhood has given some social problems.
    The way I helped him start each day with a burst.
    With a figure as did the things he frown to get started with the day.
    Our day together run still in very solid frames. It is something that provides security for both of us.
    Now he is so old that he makes things even as he has for some years also been able to travel and meet the most necessary everyday things.
    Some of his friends are a little more absent-minded than he is so they’d certainly could use such a device as shown in the video.
    Can I ask has also made a kind of routine training with your child?
    Steen

    • Linda

      Hello Steen! You have made an excellent point that even though your son is not autistic, his developmental disorder raises concerns that manifest in some social problems. I totally understand what you are sharing here, as initially that was all I had for my granddaughter was the acknowledgment that she had ‘global developmental delays‘.

      It makes excellent sense to have the activities of your day and his day running in a solid well arranged ‘frame’ work. It must feel so good to have a sense of security by establishing your day in clear parameters. Isn’t it wonderful that by doing this you have ensured that he is less absent-minded and no doubt better able to function.

      And YES…I have found that routine and well-established expectations has helped immensely with my child? When she knows what to expect things do go more smoothly. The sad part is that life happens, right? And routines get broken for one reason or another. This is why I emphasized in my post that it is VERY important to understand if our loved one is eloping, to get away from loud noise for instance, or wandering because they want to follow the sound of that fire engine, or get to that pool.

      I appreciate your time by coming here to my website. I hope you found something of value while poking around. “-)

      Linda

  • This is important information for all parents and caretakers because all children can wander, and the elderly as well. Many parents have an autistic child but without a diagnosis they really do not know what is going on in that child’s mind, or how to cope with the behavior..

    Even though we understand ASD much better today it is still a very misunderstood disorder, even among medical practitioners.

    For those on public assistance an ASD diagnosis can be an expensive proposition for the institution. I have seen cases where practitioners are encouraged to diagnose something else which is institutionally less expensive, denying or delaying a critically necessary diagnosis.

    Our court system is a nightmare when it comes to autistic defendants. When an ASD sufferer runs afoul of the law a prosecutor may try to portray them as a dangerous psychopath in order to get the conviction they desire. Many ASD patients are in jail for their disorder instead of in treatment.

    Thank you for an important and necessary post.
    Gary
    share-a-like dot com

    • Linda

      Oh my goodness, Gary. What an insightful and valued comment you have left for me. It sounds to me that you have been in the mix of caring for someone on the ‘spectrum’ as is often said nowadays. And you have soundly made your point.

      My granddaughter would not be seen as autistic when first meeting her. They haven’t seen how far she has come and how much she struggles with school because of how difficult it can be for her to process what is going on. When she had very little language she was a much different child.

      What you have shared about the public assistance world and the legal system is sobering information indeed. Thankfully, I haven’t had to fight for services, just firmly advocate a few times. I will tell you that the entire law and prison thing breaks my heart. YES it is a nightmare. I can see how the legal system and communities can fail young ones, especially if they don’t have a parent who can muster their resources and savvy to help their child. When these kids are young is when its time to help them succeed in social environments and to have in place adequate supports for when they transition to adulthood. It’s all so frightening really when you can see an end result that leaves them imprisoned instead of them getting the help they truly need.

      Yes your comment is MOST appreciated. If we can help parents now to care for their kiddos who can present with a host of challenging behaviors then we can hopefully establish more balance and happiness in everyone’s lives.

      Thank you.

      Linda

  • Wow, what an insightful post. I’ll be honest, I’d never heard of ASD, and I can only imagine how terrifying it must be for you to deal with.
    The resources that you’ve listed seem like a great helping hand to try to deal with the issue- so I’m sure you’ve done a lot of people a huge favour in sharing this information.
    I have so much respect for anyone that deals with people with special needs- I used to work for a charity that helped severely disabled adults to interact with horses, and it was the most rewarding thing I’ve ever done. The carers that came with these clients were some of the most incredible people I’ve ever met. I can’t even imagine how difficult their job was, but they were glad to do it. Absolutely inspiring.

    • Linda

      Dear Chloe,

      Thank you very much for the time you have taken to comment on this important subject. I so agree with you, the ‘carers’ that ‘take care’ of special needs folks and children have amazing resilience.

      I am familiar with the horse program that you mentioned. They have something similar in our community that also supports youth who have experienced some trauma in their life. I will have to do a post about this form of interaction for special needs folks as I believe there is great power in the interaction and outcomes.

      I hope as folks find my site and what it has to offer they will find something of value that will support them. What I have been learning I have been sharing in the hopes it will shorten another parent’s learning curve and maybe reduce some of their stress. And what better outcome than to have resources that help their loved ones too.

      I appreciate you taking time to leave your thoughts and comment.

      Linda

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