Autism and Wandering

Dear friends,

My son used to be a runner... It was one of the most difficult times of our lives. We literally could not turn our back on him for a second or he would be off. When little man was born we needed a double buggy because I could not trust the big lad to sit on a buggy board, he had to be strapped in or he would bolt. I will never forget when he ran at the beautiful wedding we attended on the beach. I thought he was with hubby and hubby thought he was with me, panic ensued and then we noticed a tiny green dot miles up the beach. Hubby ran... we were lucky! We were even luckier that he grew out of it!

This weekend a family were not so lucky as their son wandered onto the motorway that passes our village and was killed by a car. An absolute tragedy for all involved. My heart goes out to the family and to the driver of the car. A tragic accident that has been made even sadder by some of the uniformed responses on social media.

People obviously do not understand how common wandering is amongst autistic children or how difficult it is to prevent.



Wandering is:

When a person, who requires some level of supervision to be safe, leaves a supervised, safe space and/or the care of a responsible person and is exposed to potential dangers such as traffic, open water (drowning), falling from a high place, weather (hypothermia, heat stroke, dehydration) or unintended encounters with potentially predatory strangers.


Autism-wandering statistics

  • Roughly half, or 49%, of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings. 
  • In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement. 
  • More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number 
  • 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 
Source: Interactive Autism Network Research Report: Elopement and Wandering (2011) 
Source: National Autism Association, Lethal Outcomes in ASD Wandering (2012) 


The primary reasons for wandering include:

  • Enjoyment of running or exploring
  • To get to a place they enjoy (like a pond)
  • To get out of a situation that causes stress (for example, being asked to do something at school or getting away from a loud noise)
  • To go see something interesting (for example, running to the road to see a road sign)



What Can We Do to Keep Children Safe Who Might Wander?


Plan

  • Watch the child’s behaviours - Ask yourself what type of wandering best describes your child/adult (goal-directed, non goal-directed, random, sudden runner, etc.)
  • Have an emergency plan to respond
  • Keep information about the child up-to-date (picture, description)
  • Secure the home (fences, door locks)
  • Keep identification on the child (ID bracelet or information card)
  • Understand if the child/adult has a goal (Are they trying to get to water? Train tracks? Nearby park?)
  • Understand if the child/adult is trying to get away from something (Is there too much noise? Is there too much commotion? Is there boredom?) so that it may be addressed.

Prevent

  • What are the triggers? Notice signs that the child may wander off before it happens (for example, child makes a certain sound or looks towards the door)
  • For children/adults who respond to visual prompts, consider adhering stop signs on all doors at home/school, windows and gates
  • Be alert about the child’s location
  • Provide a safe location
  • Inform neighbours
  • Alert first responders
  • Place battery operated alarms on the doors that give a beep when they are opened
  • Consider having an Autism care dog - dogs can be trained to sit still when children try to bolt

Teach Safety Skills

  • Respond to safety commands (“stop”)
  • Learn to state their name and phone number or show ID
  • Learn to Swim
  • Learn road safety 
  • Read social stories 

Many people have been following the story of Ashley on Emerdale (for those of you outside of the UK, a British soap opera). Ashley has Alzheimer's and the producers dedicated a special episode to dementia, this very cleverly written episode highlighted the dangers associated with wandering behaviour. It was declared a triumph by press.

Like people with dementia, Children with Autism Spectrum Disorder (ASD) are also prone to wander away from a safe environment but despite some harrowing statistics (see above) this is not widely reported to or understood by the general public.

We are extremely tolerant of and sensitive to the feelings of family members of people with Alzheimer's who wander. Perhaps we are less tolerant towards families of autistic people because we see adults (even adults with dementia) as responsible for themselves yet children/teens with ASD wandering are seen as the responsibility of their parents.

ASD families need more support not blame. ASD parents face a massive amount of stress every day and wandering was ranked among the most stressful ASD behaviours by 58% of parents.  How can you support? By reading this article, by understanding that stress,  by being aware, by not judging, by becoming a first responder in your area, by asking that child wandering alone if they are OK...

Living with a runner is extremely difficult! When my son was young I found it hard to go out of the house on my own (especially as I had a baby too). He needed to be strapped into the buggy/car first.  He did not respond to stop or his name. Leaving toddler group every week was a particular nightmare as he would fight me all the way and I would desperately cling onto his hand and wrestle him to the car. I could not let go of him for one second! Sometimes I just did not have the energy to leave the house with him and would avoid busy places. No wonder some autistic families feel/become isolated!

We need to extend our understanding and support to families of autistic children who are facing a great challenge. It can be extremely difficult to teach them the dangers associated with wandering behaviour. But mostly we just need to be kind and think before making quick, ill informed  judgements on social media!



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