Data Requested by National Autism Association Supports Urgent Need for Resources
NIXA, Mo., April 20, 2011 /PRNewswire-USNewswire/ -- 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.
To learn more about this research study, visit http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_elopement. For wandering-prevention information and resources, visit http://www.awaare.org.
ABOUT THE NATIONAL AUTISM ASSOCIATION:
The National Autism Association is the leading voice of the ASD wandering issue. In 2008, NAA released its first article addressing the lack of Emergency Alert System Coverage for minors with developmental disabilities through Federal AMBER Alert guidelines & State Silver Alert guidelines. Minors with autism and developmental disabilities who may wander currently do not qualify for AMBER Alerts unless a known abduction has taken place. In 2009, NAA launched its FOUND Program, which provides funding to law enforcement agencies for tracking programs such as Project Lifesaver and LoJack SafetyNet.
In April and October of 2010, NAA brought the ASD wandering issue before the Interagency Autism Coordinating Committee (IACC), requesting urgent action be taken to combat wandering-related incidents in the ASD community. The group asked for data collection, federally-backed educational materials, parent outreach, assistance in obtaining AMBER Alert coverage for minors with autism, an ICD-9 medical diagnostic code dedicated to wandering, first-responder training, mandatory parental notification of wandering incidents in schools, and urgent federal support. The group also urged IACC to form a subcommittee dedicated solely to ASD safety issues. Also in 2010, NAA launched the Autism Wandering Awareness Alerts & Education (AWAARE) Collaboration and the http://awaare.org web site as a central source for wandering-prevention information and materials.
The organization's mission is to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential. For more information, visit nationalautism.org.
Rita Shreffler, NAA (Nixa, MO) 417-818-9030
Lori McIlwain, NAA (Cary, NC) 919-741-1646
SOURCE National Autism Association