Elopement and wandering with ASD: Practical tips for PCPs

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Over one-quarter of parents of children with autism spectrum disorder (ASD) report that their children have wandered or eloped from them in the previous year.¹ Currently, the prevalence of ASD is estimated at 1 in 59 children, and it is 4 times higher in boys than girls.² Within this population, safety concerns are prominent and are fundamental priorities for care. These behaviors impact children and families who experience other neurodevelopmental differences, including developmental delays, intellectual disabilities, genetic syndromes, emotional disorders, and behavioral disorders. Primary care providers (PCPs) are on the front lines to address these concerns, yet resources are limited and difficult to access.

Defining elopement and wandering

Elopement has been more clearly defined as leaving a designated supervised area without permission.^2,3 The concept of wandering, however, has not been clearly delineated from elopement. In clinical practice, elopement is a term used to describe behaviors that occur impulsively and quickly, such as running or bolting from caregivers or contained supervised areas. In contrast, wandering is a more unfocused behavior. For example, it may consist of straying from a designated supervised area away from the sight of a caregiver.

Although elopement and wandering are common and serious problems for families of children who have ASD, there is limited research on this subject and few treatments have been shown to successfully prevent or reduce these behaviors.

Of all the interventions studied, many have small sample sizes (1 to 3 participants) and, therefore, cannot be generalized to the larger population.⁴ The dearth of research is an important opportunity to prioritize the research agenda to align with family priorities and clinical practice guidelines. Primary care clinicians are often asked how to respond to these behaviors. It is an issue that leaves families, educators, and clinicians feeling helpless, but this does not need to be the case. In fact, there are practical ways clinicians and families can work together to decrease elopement and wandering.

In children with ASD, elopement risk increases with severity of symptoms.¹ Studies have shown that approximately 50% of caregivers of children with ASD eloped at least once after age 4 years. Approximately 25% of individuals with developmental disabilities and 35% of individuals with co-occurring intellectual disabilities have eloped within in the last year.^1,3

In some circumstances, elopement and wandering behaviors do not cause imminent harm, such as when a curious child wanders to the next aisle in the grocery store or is attracted to an enticing activity or event nearby. However, current research has highlighted the overwhelming amount of children placed in situations where elopement and wandering result in imminent harm or accidental death. These situations may include when a child exits the family home and wanders to a nearby water source, walks into traffic, or strays in public spaces with potentially predatory strangers. As such, these behaviors do increase the likelihood of childhood trauma, injury, and death, as well as subsequent familial distress.

Scope of the problem

According to the National Autism Association (NAA),⁵ 58% of parents ranked wandering among the most stressful behaviors associated with ASD. Nearly half of children with ASD attempt to elope from safe environments, and this is quadruple the rate of their typically developing siblings. More than one-third of children with ASD who wander or elope are never or are rarely able to communicate information to community members who can help identify or reunite them with their caregivers (ie, indicating their name, address, and phone number).

Moreover, 66% of parents report a “close call” with a traffic injury and 33% describe a “close call” with drowning.⁵ Furthermore, due to fears that their children may run away from them in public places, 62% of families do not attend activities outside the home. Forty percent of parents indicate that these fears impact their abilities to sleep. Alarmingly, half of families of children who have eloped report never having received guidance from a professional. In fact, only 14% of affected families report receiving guidance from their pediatrician.

An updated 2017 study from the NAA reported even higher occurrences of elopement and wandering.⁶ Of 808 missing person cases of wandering and elopement in individuals with ASD reported between 2011 and 2016, 17% resulted in death, 13% required medical attention, and 38% were at increased risk of bodily harm. Accidental death remains the highest lethal outcome at 71% of individuals with ASD followed by traffic injuries in 18% of reported deaths.

According to the NAA study, children aged younger than 5 years experienced the highest incidence of lethal outcomes.⁶ Sixty percent of children in this age group died as a result of elopement/wandering. As for sex differences, females experienced the highest number of fatalities but fewer instances of wandering/elopement compared with males.

Deaths were highest in the spring to summer months, with over half of deaths occurring between May and August, according to the study data.⁶ Other times of increased risk included the following: times of transition; playing outdoors; family and social gatherings; overnight hours; and stressful or emotionally salient times. Individuals were often found near water, traffic, wooded areas, or a stranger’s residence. Additionally, with the onset of summer break from school creating greater availability for family vacations or local adventures, more opportunities for elopement and wandering may exist due to an increase in less familiar or nonroutine experiences. A list of high-risk situations for elopement and wandering is provided in Table 1.

These sobering statistics manifest the need to ask about injury prevention and safety skill building, particularly as families are interested in and are likely motivated to take preventable action that may save the life of their child.

Therapy priorities

Accessing effective interventions to prevent elopement and wandering can be challenging, as this behavior can be difficult to predict and serves several functions (eg, gaining attention from others; getting access to a tangible item or preferred activity; escape or avoidance; and/or sensory). In addition, families of children with ASD are already participating in various types of interventions across a multidisciplinary team of providers in outpatient and school settings. These providers often include speech therapists, occupational therapists, physical therapists, physicians, psychologists, and behavioral therapists.

It is critical to consider injury prevention and safety skill building as clinical priorities by primary care teams. As such, appropriate screening during patient care visits to examine risk and/or severity in occurrence of elopement and wandering behavior is strongly recommended. Furthermore, intervention aimed at prevention is key.

More recent literature has examined parents’ priorities for therapies for their children with ASD. These are behaviors and skills that they identify as high-need areas for educational training, treatment, or intervention. In particular, parents prioritize treatment concerns according to what they view as key areas of deficit.⁷

What PCPs can do

In addition to screening for elopement and wandering during well child visits, providing parent education about the likelihood of elopement and wandering can be a key prevention tool. The questions listed in Table 2 can help PCPs advise families with ways to assess a child’s risk for wandering and elopement.

Providing families with starter kits (Table 3) such as the NAA’s Big Red Safety Box⁸ and the Be REDy Booklet for Caregivers⁹ can provide information and tools to get started. Similar to the NAA initiatives, in partnership with Safe Kids Chicago,¹⁰ the Pediatric Developmental Center and Injury Prevention team at Advocate Children’s Hospital at Advocate Illinois Masonic Medical Center, Chicago,¹¹ offers Safety Backpacks with tools that a family can start using immediately to help create physical barriers for elopement and wandering, as well as to prevent injuries. Additionally, connecting families to web resources such as Autism Speaks¹² can help them gain access to personalized social stories that teach their children about the dangers of elopement and wandering and how to stay safe. Encourage patients to register with their local first responders with Smart911¹³ that provides key information to help keep their child safe or gain access to assistance in emergency situations.

What families can do

Families should be encouraged to utilize individualized identification methods with the names and phone numbers of caregivers when venturing out into the community. For example, parents may purchase identification bracelets, available in cloth, plastic, or metal, to cater to a given child’s potential tactile sensitivities. Consider encouraging families to explore the possibility of a child-wearable GPS device. For children unable to tolerate bracelets, many families have used personalized labels tied into shoe laces or affixed to clothing that are difficult for a child to remove but hold necessary information to contact a parent or guardian if the child should become lost. Temporary tattoos are another option for children who do not tolerate bracelets.

Additionally, parents can take measures such as installing physical barriers that would prevent a child from exiting the family home. This may include tamperproof locks on exterior doors installed at heights that cannot be reached; bells or alarms to signal opened windows or doors; and weights, bolts, and straps to stabilize furniture that may be easily knocked over if children climb on them.

Tips for traveling

Families also express concern about safe travel with their children. In particular, children escape from car seats while driving or do not stay with parents while riding the bus or train. Initial questions to consider with families are depicted in Table 4.

For families of children with developmental differences, traveling may pose its own challenges. This may include traveling for a family vacation but also traveling short distances to school, daycare, or the grocery store in a car or school bus. As previously mentioned, family vacations occur at higher rates during the summer months while children are typically out of school. Greater likelihood of elopement and wandering may occur in novel situations, such as when traveling on an airplane, staying in a hotel, and exploring resorts or amusement parks with water sources and large crowds. Referring families to the Transportation Security Administration (TSA)¹⁴ website for further information on Disabilities and Medical Conditions allows families to select specific travel recommendations for individuals with ASDs and/or intellectual disabilities to facilitate success when navigating security checkpoints. Additionally, many airports or airlines offer walkthroughs or mock flights. Consider helping your families to better prepare themselves by encouraging them to inquire about this opportunity at your local airport.

Vehicle travel, whether via car or school bus, can be a distressing situation if a child tends to wander or attempts to escape a vehicle while in motion. It is important for PCPs to inquire about traveling in a vehicle and how the family believes their child tolerates this. Situations may include daily car rides with family or riding the school bus.

Vehicle safety includes maintaining appropriate behaviors in the car (ie, not grabbing or throwing things at the driver or passengers) but should also place emphasis on the child’s ability to tolerate safety restraints, such as car seats and seat belts. Angell and Solomon¹⁵ in their 2018 study discuss the necessity of evaluating “transportation situations” for children with ASD.

For children who display wandering behaviors, exiting a school bus at the appropriate bus stop can be a challenging situation. For children who are minimally verbal, responding to appropriate verbal cues may be an issue.¹⁵ For children riding the school bus, it is recommended that PCPs encourage a family’s collaboration with school staff and administration, as well as the school bus company, to help put procedures in place to help prevent serious safety situations that may endanger a given child and fellow passengers. Families may be advised to talk to their educational teams regarding safety as a goal within their child’s Individualized Education Plans.

As car seat laws continue to change to ensure children are riding in the appropriate safety restraint up to a higher age and weight limit, it is crucial for PCPs to address safe travel options for children who have a tendency to elope or try to “escape” their car seats. Some children with ASD will attempt to open car doors while the car is in motion, or unbuckle their car seat harness or seat belt, placing them at further risk for greater injury or accidental death. Seat belts and car seats are essential for families to help control for situations in which a child may sustain further injury due to inability to perceive danger, or to respond to a caregiver’s verbal directives due to limitations based on the child’s age, language, or cognitive level.

With motor vehicle accidents being the leading cause of death in children across the United States,¹⁶ it may also be necessary for families to consult a certified child passenger safety technician to discuss the options for “car seat escape artists.”¹⁷ The Injury Prevention Program at Advocate Children’s Hospital offers Free Car Seat Checks¹⁸ with certified car seat technicians who can evaluate and give instruction on proper car seat installation at no cost to families. Appointments for a Free Car Seat Check are available across many Advocate Chicagoland locations. Many major hospitals and community organizations are beginning to offer a similar service and may do so in your community.

Some strategies to ensure safe travels include the following:¹⁷

1. Teach children what to expect while traveling in the car.

2. Praise and reward children for positive car seat behaviors.

3. Be consistent with rules while travelling in the car.

4. Children may require an adult to sit in the back with them for supervision.

5. Consider consultation with a car seat technician with special-needs training.

Treatment goals

In clinic, treatment goals in pediatric populations often include working on decreasing problematic behaviors, skill building, and socialization. Behavioral interventions can be helpful in both preventing and reducing occurrence of elopement and wandering. Clinically, these behaviors can be difficult to treat, as the function of elopement and wandering behavior can vary from child to child. In general, functions of behavior include gaining attention; escape or avoidance; obtaining access to preferred tangibles or activity; autonomic action; and meeting sensory needs.

Summary

Rates of elopement and wandering have increased, indicating more affected families and more children at risk of serious injury or death. These behaviors leave families frightened and in a constant state of stress. Given that few families report receiving consultation from their PCPs, first steps include asking families if they are concerned about their children’s safety and ability to ask for help.

Primary care providers are on the front lines of helping families feel supported, hopeful, and connected with resources to address these behaviors. These behaviors must be addressed prior to moving forward with other developmental, educational, social, and adaptive goals for children with developmental differences. In addition to asking about safety, specific resources are available to prevent these behaviors and to decrease them when they occur. Educators and therapists are also critical resources for families as they may support children’s individual learning styles.

Acknowledgement: The authors wish to thank Michael E. Msall, MD, for his thoughtful ideas and suggestions for this manuscript.

References:

1. Kiely B, Migdal TR, Vettam S, Adesman A. Prevalence and correlates of elopement in a nationally representative sample of children with developmental disabilities in the United States, PLoS One. 2016;11(2):e0148337.

2. Baio J, Wiggins L, Christensen DL, et al. Prevalence of autism spectrum disorder among children aged 8 years-Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2014. MMWR Surveill Summ. 2018;67(6):1-23. Erratum in: MMWR Morb Mortal Wkly Rep. 2018;67(19):564. Erratum in: MMWR Morb Mortal Wkly Rep. 2018;67(45):1280. Erratum in: MMWR Morb Mortal Wkly Rep. 2018;67(45):1279.

3. Boyle MA, Adamson RM. Systematic review of functional analysis and treatment of elopement (2000-2015), Behav Anal Pract. 2017;10(4):375-385.

4. Call N, Alvarez JP, Simmons CA, Lomas Mevers JE, Scheithauer MC. Clinical outcomes of behavioral treatments for elopement in individuals with autism spectrum disorder and other developmental disabilities, Autism. 2017;21(3):375-379.

5. National Autism Association. Autism and safety facts. Available at: https://nationalautismassociation.org/resources/autism-safety-facts/. Accessed July 16, 2019.

6. National Autism Association. Mortality and Risk in ASD Wandering/Elopement 2011-2016. Available at: http://nationalautismassociation.org/wp-content/uploads/2017/04/NAAMortalityRiskASDElopement.pdf. Published March 2017. Accessed July 16, 2019.

7. Pituch KA, Green VA, Didden R, et al. Parent reported treatment priorities for children with autism spectrum disorders. Res Autism Spectrum Disord. 2011;5(1):135-143.

8. National Autism Association. Big Red Safety Box 2018. Available at: http://nationalautismassociation.org/big-red-safety-box/. Accessed July 16, 2019.

9. National Autism Association. Be REDy Booklet for Caregivers 2018. Available at: http://nationalautismassociation.org/store/ - !/NAAs-Be-REDy-Booklet-for-Caregivers/p/57859415/category=2416355. Accessed July 16, 2019.

10. Safe Kids Worldwide. Safe Kids Chicago. Available at: https://www.safekids.org/coalition/safe-kids-chicago. Accessed July 16, 2019.

11. Advocate Children’s Hospital. Autism, wandering and elopement. Available at: https://advocatechildrenshospital.com/care-and-treatment/injury-prevention/autism-wandering-elopement/. Accessed July 16, 2019.

12. Autism Speaks. Wandering prevention resources. Available at: https://www.autismspeaks.org/wandering-prevention-resources. Accessed July 16, 2019.

13. Smart 911. Plan ahead for any emergency. Available at: https://www.smart911.com/. Accessed July 16, 2019.

14. Transportation Security Administration (TSA). Disabilities and medical conditions: Autism, autism spectrum, and intellectual disabilities. Available at: https://www.tsa.gov/travel/specialprocedures?field_disability_type_value=0 . Accessed July 16, 2019.

15. Angell A, Solomon O. Understanding parents’ concerns about their children with autism taking public school transportation in Los Angeles County. Autism. 2018;22(4): 401-413.

16. Centers for Disease Control and Prevention. Motor vehicle safety. Get the facts. Available at: https://www.cdc.gov/motorvehiclesafety/child_passenger_safety/cps-factsheet.html. Accessed July 16, 2019.

17. Indiana University School of Medicine. Automotive Safety Program. Special needs transportation. Available at: https://preventinjury.pediatrics.iu.edu/special-needs/medical-conditions/. Accessed July 16, 2019.

18. Advocate Children’s Hospital 2019. Injury prevention: Your guide to car seat safety. Available at: https://www.advocatechildrenshospital.com/care-and-treatment/injury-prevention/child-passenger-safety. Accessed July 16, 2019.