Be “AWAARE” of Autism

The National Autism Association is getting the word out and saving lives with their Big Red Safety Toolkit! The goal of their AWAARE (Autism Wandering Awareness Alerts Response Education) website is to help prevent wandering incidents and deaths within the Autism community.

Similar to wandering behaviors in seniors with dementia or Alzheimer’s, children with Autism are prone to wandering away from a safe environment. Unfortunately, many cases end in tragedy.

Wandering is the tendency for an individual to try to leave the safety of a responsible person’s care or a safe area, which can result in potential harm or injury. This might include running off from adults at school or in the community, leaving the classroom without permission, or leaving the house when the family is not looking. This behavior is considered common and short-lived in toddlers, but it may persist or re-emerge in children and adults with autism. Children with autism have challenges with social and communication skills and safety awareness. This makes wandering a potentially dangerous behavior. Wandering may also be referred to as Elopement; Bolting; Fleeing; or Running.

IMPORTANT FACTS
. Nearly half of children with autism engage in wandering behavior.
. Wandering occurs across all settings, under every type of adult supervision.
. Increased risks are associated with autism severity.
. Half of families report they have never received advice or guidance about wandering from a professional.
. Accidental drowning accounts for approximately 90% of lethal outcomes.

WANDERING DANGERS
Drowning; Exposure; Dehydration; Hypothermia; Traffic Injuries; Falls; Physical Restraint; Encounters with strangers; Encounters with law enforcement.

A study published in Pediatrics showed that 49% of children with an ASD attempt to elope from a safe environment.

Like dementia, persons with autism gravitate towards items of interest. This could be anything from a road sign they once saw to a neighbor’s pool to a merry-go-round in the park. Other times, they may want to escape an environment if certain sounds or other sensory input becomes bothersome. Outdoor gatherings present an especially large problem because it is assumed that there are more eyes on the child or adult with autism. However, heavy distractions coupled with an over-stimulating setting can lead to a child or adult wandering off without notice. School settings are also an issue, especially those that have un-fenced or un-gated playgrounds. A new, unfamiliar, or unsecured environment, such as a relative’s home, may also trigger wandering, as well as episodes of distress, meltdowns, or times when a child or adult with autism has certain fears or anxiety.

WHAT IS BEING DONE TO COUNTER WANDERING INCIDENTS AND DEATHS WITHIN THE AUTISM COMMUNITY?
Awareness alone is a great tool. Prevention materials have been developed to educate parents and caregivers, and efforts on a federal level are underway to address the issue.

There are many preventative measures parents and caregivers can take to keep their child from wandering.  It’s VERY IMPORTANT that any parents, caregivers, and guardians put the proper measures in place to prevent wandering. This includes anyone who may be caring for a child or adult with autism. It only takes one time for a person with autism to wander, and the risks associated with wandering are far too great to be taken lightly. Anyone with a known cognitive impairment may be at risk for wandering and the first time is often the worst time. Those with communication impairments are especially vulnerable since they may not verbalize a desire to go to a neighbor’s house or visit the pond they saw on the way to visit a relative. Because of these communication barriers, wandering can be very dangerous. Some children and adults may not be able to seek help if lost, or respond to their names when called.

Many autism-related wandering incidents and deaths have occurred at schools, day camps, and day care facilities where common supervision patterns are in place; therefore, similar to dementia-related wandering, autism-related wandering cannot be solved by supervision alone. It’s important to understand that autism elopement is a medical condition, and that those with autism may take any opportunity to wander towards something or away from something whenever and however possible. Individuals prone to wandering often are reported as being keenly aware of when focus is shifted away from them, and will plan wandering attempts accordingly. It’s also important to understand that caregivers must cook, take showers, sleep, etc., and may have other children to tend to as well. Close adult supervision differs from around-the-clock contact, and it’s simply unrealistic for any human being to maintain complete focus on any one person or thing 24 hours a day. Close adult supervision is critical and any child or adult with autism should be closely supervised at all times. Accompanying measures should also be in place to secure the home, and ensure the child’s safety while preventing opportunities to wander.

The National Autism Association is committed to those with an Autism Spectrum Disorder (ASD) who may be prone to wandering off or eloping from a safe environment, and may be unable to recognize danger and/or stay safe. Wandering, elopement, “running” or fleeing behaviors among those within our community not only present unique safety risks, but also create extraordinary worry and stress among caregivers. Drowning fatalities following wandering incidents remain a leading cause of death among those with ASD.
As such, the NAA provides direct assistance to law enforcement agencies and caregivers through its FOUND and Big Red Safety Box Programs. FOUND supplies funding to search-and-rescue agencies in need of tracking technology and training, and the Big Red Safety Box is a free-of-charge toolkit given to autism families in need as a means to educate, raise awareness and share simple tools that may assist them in preventing, and responding to, wandering-related emergencies.

NAA’s Big Red Safety Box includes the following resources:
1) Our Get REDy booklet containing the following educational
materials and tools:
– A caregiver checklist
– A Family Wandering Emergency Plan
– A first-responder profile form
– A wandering-prevention brochure
– A sample IEP Letter
– A Student Profile Form
2) Two (2) Door/Window Alarms with batteries
3) One (1) RoadID Personalized, Engraved Shoe ID Tag*
4) Five (5) Laminated Adhesive Stop Sign Visual Prompts for
doors and windows
5) Two (2) Safety Alert Window Clings for car or home windows
6) One (1) Red Safety Alert Wristband

*You will receive instructions to submit a custom personalization order online at roadid.com. Your tag will be quickly engraved with your emergency information and mailed to you at no charge.

Regardless of any tools caregivers may have in place, if a loved one’s medical condition interferes with their ability to recognize danger or stay safe, it is critical that caregivers maintain close supervision and security in all settings. For more information and ways to prevent wandering-related incidents, please visit http://awaare.org

Those diagnosed with an Autism Spectrum Disorder and who are at risk of wandering/bolting from a safe environment, qualify to receive a free Big Red Safety Box when grant funding and inventory are available.  NAA’s Big Red Safety Boxes are packaged and shipped with care by a company employing adults with autism and other developmental disabilities. Visit http://nationalautismassociation.org for full details.