Wandering and Autism

Wandering/Elopement is a very real and stressful concern of parents/caregivers of those with Autism.  It has become so common to turn on the news or log onto social media and see that another child or adult with Autism has gone missing.  It is reported that close to 50% of those with Autism will wander (or attempt to wander) from a safe environment.  In the US, drowning accounted for roughly 91% of deaths in children with ASD, ages 14 and younger.  At least a third of those children with Autism who elope cannot communicate their name, address, or phone number.  Here are some heartbreaking numbers on wandering in the Autism community:

  • Two in three parents of elopers reported their missing children had a “close call” with a traffic injury
  • 32% of parents reported a “close call” with a possible drowning
  • Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers
  • 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
  • 40% of parents had suffered sleep disruption due to fear of elopement
  • Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings
  • Half of families with elopers report they had never received advice or guidance about elopement from a professional
  • Only 19% had received such support from a psychologist or mental health professional
  • Only 14% had received guidance from their pediatrician or another physician

What is pretty darn scary about these numbers is that more than half of the parents/guardians of those with Autism had not been talked to about elopement.  None of my son’s doctors had this talk with me.  You would think with an issue as serious as this, happening so often, that this would be something that would be brought up.  I fear that my son will wander off, as he has tried to several times before.  It is scary and stressful.  We have the road id tag to attach to his shoes with his name, address, our phone number, his diagnosis, and the fact that he is nonverbal written on that tiny piece of metal.  We also have door and window alarms to alert us when he tries to open the door.  And yet none of this really makes us feel any safer.  Wandering can occur in any setting and under any kind of supervision.  According to the National Autism Association, wandering is most likely to occur:

  • During warmer months – seasonal transitions
  • During holidays such as Mother’s Day, Memorial Day, Father’s Day, Fourth of July, Labor Day, and other warm-climate holidays
  • During family gatherings, parties, outdoor activities
  • Camping & hiking outings • Visits to non-home settings, such as a friend’s home or vacation setting
  • After a family moves to a new home
  • When adjustments have been made to a home to accommodate warmer weather, especially window screens, window fan units, A/C units and screen doors.
  • During classroom transitions from one classroom to another, or during other transitions.
  • During times of stress or when escalation triggers arise (typically the child/adult will bolt)

What can we do about wandering/elopement?  What can we do to protect our loved ones should they wander? 

For starters, our medical professionals need to be talking about the risk of eloping behaviors with the parents/caregivers of those with Autism, it is incomprehensible that something as prevalent, with often devastating outcomes, such as wandering in those with Autism is not talked about between medical professionals and parent(s).  Parents need resources and advice on wandering.  We, the parents/caregivers, need access to more affordable home safety equipment and some water safety programs.  Insurance coverage and federal funding for tracking devices should be more readily available.  They have such resources for those with Alzheimer’s.  Given the fact that such a sizable chunk of those that wander are unable to communicate, or communicate effectively, access to devices with AAC programs needs to increase.  Research into the ins and outs of wandering, understanding who is more at risk, are those with more specific kinds of behaviors more prone to wander?  Does the risk of wandering increase or decrease with severity of Autism?  Perhaps our healthcare professionals need to be more trained in wandering behaviors.  Our schools need to be better prepared.  Training, programs, resources, etc.  What should the school do if a child were to wander off during school hours?  They need to have some kind for working protocol in place should this occur.  The AMBER alert, which right now does not include those with disabilties.  I know in the state of Texas they have the Endangered Missing Persons Alert (EMPA), which does include those with disabilities (including Autism), and is similar to the AMBER alert in it’s notification process, with the exception of EAS (Emergency Alert System) notifications, which in my opinion is something that the EMPA needs…proving your child’s disablity is a major part of implementing this alert, without proof, they will not activate the EMPA.  We need an alert that is equal to that of the AMBER alert.

What should you do if your child is missing? 

Stay calm…easier said than done, I know.

Call 911

Search nearby water first.

Implement your Family Wandering Plan (courtesy of AWAARE)

Resources: 

For parent/caregiver or first responder, I received the door and window alarms through AWAARE and their Big Red Box.  It was free of cost to me, but if you want to ensure that another person can get a box as well, you are more than welcome to donate.  Deets: http://awaare.nationalautismassociation.org/safety-materials/

Here’s an exceptionally helpful resource for law enforcement/first responder, I intend on finishing up my little “presentation” with information from this page and others and presenting it to my local law enforcement.  So much information on this one page.  Deets: http://awaare.nationalautismassociation.org/for-first-responders/

I hear that there is now an ICD-9 code for wandering, I don’t know what it is exactly, but this is something that you should speak with your child’s doctor about.  Obtain a letter from child’s doctor detailing the wandering behavior for you to take to your child’s school, camp, etc.

Here is a Caregiver checklist, http://nationalautismassociation.org/docs/BRSTChecklist.pdf

And this is probably one of the best pieces of information you’ll get out of this piece.  It’s pretty much a condensed version of what I have written, complete with links to other really great sites, including service dogs and tracking devices.  http://awaare.nationalautismassociation.org/wp-content/uploads/2014/07/wanderingbrochure.pdf

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