Autism Spectrum Disorder (ASD) now affects 1 in 68 individuals, and according to a 2012 study published in Pediatrics, 49% are prone to wandering away from a safe environment such as school or home. Individuals with autism are often attracted to water, yet have little to no sense of danger. Drowning is a leading cause of death in children with autism.
Also according to the Pediatrics study, 50% of ASD families reported they had never received advice or guidance about elopement from a professional. Awareness alone is a valuable safeguard, so it’s critical that ASD caregivers are warned about wandering tendencies, and how to prevent wandering.
WHAT IS ASD WANDERING?
ASD Wandering, also referred to as ASD Elopement, is the tendency for an individual with an ASD 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.
ASD WANDERING DANGERS
The primary danger of ASD wandering is drowning, but vehicular/train accidents, heatstroke, hypothermia, and falls are others causes of death. Other dangers can include dehydration, exposure, physical restraint, emotional trauma, and encounters with strangers & law enforcement
ASD WANDERING DATA
➢ Nearly half of children with autism engage in wandering behavior
➢ Increased risks are associated with autism severity
➢ More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
➢ Accidental drowning accounts for approximately 90% of lethal outcomes
ASD WANDERING INSIGHTS
ASD wandering is usually a form of communication — an “I need,” “I want,” or “I don’t want.” Individuals with ASD will wander or bolt to get to something of interest, or away from something bothersome. Wandering occurs under every type of adult supervision, and across all settings. According to data from the National Autism Association, wandering occurs most during: Warmer months; Warm-climate holidays such as Mother’s Day, Memorial Day, Father’s Day, Fourth of July; family gatherings, other gatherings, or 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; Time when adjustments have been made to a home to accommodate warmer weather, especially window screens, window fan units, A/C units and screen doors; Classroom transitions from one classroom to another, or during other transitions; Times of stress or when escalation triggers arise (typically the child/adult will bolt.)
PREVENTION/RESPONSE RECOMMENDATIONS TO FAMILIES
It’s important to cover the elopement/wandering topic with all ASD caregivers, even those who don’t feel their child is prone to the behavior. The central source for ASD Wandering is the AWAARE.org website. Recommendations may also include:
➢ Getting a diagnosis: An ICD-9 diagnosis code is now available for wandering. You may assign code V40.31 – Wandering in diseases classified elsewhere to your patients who qualify.
➢ Receiving a doctor’s letter: provide a letter for parents to take to their child’s school or summer camp to outline the dangers of wandering and recommend hyper vigilance and safeguards.
➢ Downloading the Caregiver Checklist
➢ Downloading the Awareness & Prevention Brochure
➢ Downloading the Family Wandering Emergency Plan
➢ Downloading the First Responder Alert Form
➢ Downloading the Toolkit for Caregivers
You may also provide this handout from the American Academy of Pediatrics.
If a person with autism is missing, always recommend that caregivers search immediate areas that pose the highest threats, such as nearby water (ponds, lakes, creeks, rivers, pools) and busy roads. Even if the child or adult is known to dislike water, taking baths, brushing teeth, etc., natural bodies of water may be perceived differently by the child. It’s critical to encourage that they always search nearby water first.
Because a higher number of incidents occur during times of commotion, such as family gatherings and transitions, you may recommend that caregivers use a “TAG YOU’RE IT” system to assign one responsible adult to closely supervise the child during an agreed-upon period of time.
TOOL RECOMMENDATIONS
➢ Essentials: adequate locks and basic home security items
➢ Door & Window Chimes: very inexpensive & effective. Available at most Radio Shack and Walmart Stores
➢ Simple Stop Signs: caregivers can print and adhere stop signs on doors and windows as a simple visual prompt
➢ Swimming Lessons: encourage caregivers to call their local YMCA or aquatic center even if it is assumed that these facilities do not cater to children with special needs, or that the child is incapable of learning. For a listing of YMCA’s that cater to special needs, click here.
➢ Tracking Technology: encourage the caregiver to call local law enforcement to inquire about any existing tracking technology that may be available, such as Project Lifesaver
➢ Identification: wearable ID’s are ideal, such as those from RoadID.com and MedicAlert.org. Shoe ID’s may be recommended for those whose children have tactile sensitivities.
➢ Baby monitors: during the night, it may be necessary for caregivers to keep a baby monitor next to their bed.
MEDICAL INTERVENTIONS
Sometimes underlying medical issues, such as insomnia, epilepsy, sensory dysfunction, anxiety, fight/flight irregularities, or pain can stir wandering tendencies.
It’s important to ask questions and investigate possible comorbid conditions that may be contributing to elopement behaviors.
For severe cases in need of comprehensive strategies, please write us at naa@nationalautism.org or call 877.622.2884.
