IAN survey reveals preliminary results on wandering and elopement in ASD children

Almost one year after National Autism Association urged the Interagency Autism Coordinating Committee (IACC) to address the absence of critical research on autism-related wandering incidents and fatalities, the Interactive Autism Network (IAN), the nation's largest online autism research project, revealed the preliminary results of the first major survey on wandering and elopement among individuals with autism spectrum disorders (ASD).

The wandering and elopement survey found that approximately half of parents of children with autism report that their child elopes, with the behavior peaking at age four. Among these families, nearly 50% say that their child went missing long enough to cause significant concern about safety.

"This survey is the first research effort to scientifically validate that elopement is a critical safety issue for the autism community," said Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute in Baltimore, Maryland. "We hope that advocates and policy makers use this research to implement key safety measures to support these families and keep these children safe."

In just three weeks, more than 800 parents of children with autism completed the survey. The findings highlighted below summarize the compelling results and crucial safety concerns identified by parents:

Dangers of Elopement

The tendency of individuals with ASD to wander or "bolt" puts them at risk of trauma, injury or even death:

• More than one third of children who elope are never or rarely able to communicate their name, address, or phone number verbally or by writing/typing
• Two in three parents report their missing children had a "close call" with a traffic injury
• 32% of parents report a "close call" with a possible drowning.

Effect of Wandering on Families

• Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers
• 62% of families with 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 seven and 10 than their typically-developing siblings

Resources, Support for Families

• 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

Motivations for Elopement

Despite speculation that summer is the peak season for elopement, 67% of parents of elopers said they saw no seasonal pattern at all; only 25% felt summer was the peak season. The top five reasons parents believed their children eloped included:

• Enjoys exploring (54%)
• Heads for a favorite place (36%)
• Escapes demands/anxieties (33%)
• Pursues special topic (31%)
• Escapes sensory discomfort (27%)

The National Autism Association believes the new findings underscore the urgent need for federal aid and resources to combat wandering incidents and provide critical support for caregivers. Yesterday, authorities found the body of Blake Murrell, a four-year-old boy with autism who went missing in Payne County, Oklahoma. In 2010, ten children with autism died following a wandering incident. According to news reports, four children in the U.S. have died this year, and there are two known cases abroad. Adam Benhamama, a three-year-old boy with autism from Quebec, has been missing since early April.

Yesterday, NAA launched its "Big Red Safety Box" Program to combat wandering incidents. The toolkit, made possible by a generous grant from the American Legion Child Welfare Foundation, is designed to provide caregivers wandering-prevention educational materials and tools.

Those diagnosed with an autism spectrum disorder, and who are at risk of wandering/bolting from a safe environment, qualify to receive a Big Red Safety Box while supplies allow. To apply, visit http://nationalautismassociation.org/bigredsafetybox.htm.

After further analysis of the data, the IAN Project will publish additional findings, such as how children with ASD who wander differ from children with ASD who do not, the financial and emotional burden on parents, and the steps parents can take to prevent elopement.  

The research was funded by the Autism Research Institute, Autism Science Foundation, Autism Speaks and Global Autism Collaboration – of which NAA is a member organization.