Today, the Interactive Autism Network (IAN), http://www.ianproject.org, the nation’s largest online autism research project, reveals the preliminary results of the first major survey on wandering and elopement among individuals with autism spectrum disorders (ASD), and announces the launch of a new research survey on the association between pregnancy factors and 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 of 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 7 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 5 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%)

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 take to prevent elopement.

This research was funded by the Autism Research Institute, Autism Science Foundation, Autism Speaks and Global Autism Collaboration.

Pregnancy and Birth Questionnaire

The IAN Project also announces today the launch of a new research survey to explore the association between potential pregnancy- and birth-related factors and ASD. The research initiative will explore:

  * Use of fertility treatments
  * Pregnancy complications
  * Illness or infection during pregnancy
  * Medications taken during pregnancy
  * Number of ultrasounds
  * Induction of labor and birth complications

“It is very common for a woman whose child receives an autism diagnosis to agonize about possible causes, and to focus especially on her pregnancy or the child’s birth,” said Dr. Law. “Researchers are exploring a variety of possible pregnancy and birth factors that might be associated with ASDs. To advance research on potential causes of ASD, it’s important to learn not only if any of these factors are linked to ASDs, but also which of them are not.”

Comparisons between children with ASD and typical siblings are crucial to this research, so the IAN Project needs information on pregnancies and births of both children with ASD and their siblings. Survey participants must be U.S. residents enrolled in the IAN project (to register, visit http://www.ianresearch.org) and the birth mother of a child with an ASD who is between the ages of 0-17.

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In addition to Autism Speaks, the Simons Foundation and the National Institutes of Health also support the IAN Project.

About the Kennedy Krieger Institute

Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain and spinal cord, the Kennedy Krieger Institute in Baltimore, MD serves more than 16,000 individuals each year through inpatient and outpatient clinics, home and community services and school-based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis.

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Contact: Colleen Butz
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202-955-6222
Kennedy Krieger Institute