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Archive for the ‘autism-related wandering’ Category

“Occurrence and Family Impact of Elopement in Children with Autism Spectrum Disorders,” was published today in the November 2012 issue of Pediatrics (published online Oct. 8). The study was conducted by the Interactive Autism Network at Kennedy Krieger Institute and indicates that half of children with autism wander away from safe environments.  The study was funded by a coalition of autism advocacy organizations led by the Autism Science Foundation.

Researchers surveyed 1,367 families with children between the ages of 4 and 17 who had been diagnosed with ASD. Nearly half – 598, or 49 percent – of the families reported that their child had attempted to elope at least once after age 4. Of those, 316 children went missing long enough to cause concern.

Greater autism severity was associated with increased elopement risk. Children eloped most commonly from their home, a store, classroom or school. Nearly half of parents said their child’s elopement was focused on an intent to go somewhere or do something, versus being confused or lost. Close calls with calamities like traffic injury or drowning are frequent, with police called in more than a third of cases.

Of parents whose children had eloped, 43 percent said the issue had prevented family members from getting a good night’s sleep, and 62 percent said their concerns had prevented family from attending or enjoying activities outside the home. For 56 percent of parents, elopement was one of the most stressful behaviors they had to cope with as caregivers of a child with ASD, and half said they received no guidance from anyone on preventing or addressing this behavior.

Read the full study here. 

Read coverage in USA Today and the New York Times.

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Today, the Interactive Autism Network (IAN), with support from leading autism advocacy groups including the Autism Science Foundation, launched the first major survey to study the experience of wandering and elopement, or escaping, among individuals with autism spectrum disorders (ASD). The tendency of individuals with ASD to wander or “bolt” puts them at risk of trauma, injury or even death, yet information on this critical safety issue is lacking.

Since 2007, the IAN Project, www.ianproject.org, has connected thousands of individuals on the autism spectrum and their families with researchers nationwide to accelerate the pace of autism research through an innovative online initiative housed at the Kennedy Krieger Institute in Baltimore, Maryland. With more than 36,000 participants today, the IAN Project has the largest pool of autism data in the world.

“Although similar behavior has been studied in Alzheimer’s disease and autism advocates identify elopement as a top priority, virtually no research has been conducted on this phenomenon in ASD,” said Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute. “The new survey will provide vital information to families, advocates and policy makers alike as they work to keep individuals with ASD safe.”

The survey will help researchers begin to answer important questions:

  • How often do individuals with ASD attempt to elope? How often do they succeed? Under what circumstances?
  • Which individuals with ASD are most at risk? At what age?
  • What burden do efforts to thwart elopement behavior place on caregivers?
  • What can be done to protect individuals with ASD and support their families?

To understand elopement and wandering behavior in ASD, researchers need information both from families of individuals who do and do not wander and elope. In order to determine who is at risk, all families in the U.S. autism community are encouraged to participate in the survey, whether or not their loved one engages in these behaviors. Survey participants must be enrolled in the IAN Project (to register, visit www.ianresearch.org) and be the parent or guardian of a child or dependent adult with ASD.

Due to the urgent need for this information by the autism community, preliminary data will be made available on April 20, 2011, provided the necessary sample size is reached for the research survey.

This survey is funded by the Autism Research InstituteAutism Science FoundationAutism Speaks and Global Autism Collaboration. The IAN Project is also supported by the Simons Foundation and the National Institutes of Health.

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We have a unique opportunity to provide protection for our family members from autism-related injuries and death, but we need to act quickly.

The ICD-9-CM Coordination and Maintenance Committee is currently considering a proposal to create a medical diagnostic code for wandering.  A diagnostic code for wandering will help protect at-risk individuals who have a documented history of wandering and will help to avert dangerous restraint and seclusion practices.

ASF strongly supports the proposal to include an ICD-9 CM secondary diagnostic code for “wandering in conditions classified elsewhere” under subcode “signs and symptoms”, where it can be applied to a range of disorders including autism,  as suggested by the Centers for Disease Control and Prevention.  This is a critical addition to the diagnostic code.  Every year, individuals with autism wander away from safe environments and are injured or killed due to drowning,  exposure to the elements or accidents. Better data on wandering associated with autism and other developmental disabilities should help to increase awareness and action among first responders, school administrators and residential facility administrators to recognize and understand wandering and develop proper emergency protocols and responses while supporting self-determination principles.    A subclassification for “wandering” is an important, needed addition.

ASF is working with the National Autism Association and other autism advocacy groups to protect our family members from both wandering related injury (and death) and restraint & seclusion.  This new diagnostic code has the potential to do both. Here are just a few of the reasons we support adding a diagnosis code for wandering:

  • A diagnostic code for wandering in disabled minors could open up critical dialogue between physicians and caregivers that have an at-risk child with a history of wandering/elopement from safe environments.
  • A diagnostic code will allow for data collection on the incidence of wandering, thereby increasing opportunities for prevention-education for doctors, caregivers, school administrators and staff, first responders/search personnel.
  • Many nonverbal ASD individuals are unable to respond to their name when called. A diagnosis code will lead to increased awareness and the development of emergency search-and-rescue response protocols.
  • Every disabled individual with a history of wandering – along with increased risk of injury, trauma and death because of wandering — deserves access to safety devices and prevention materials regardless of the caregiver’s income. A medical code for wandering could potentially provide insurance coverage for those unable to afford critical protections for their children/adults.
  • A medical code will enhance schools’ understanding of wandering so that children with a history of wandering will be better protected. Oftentimes wandering is not viewed as a medical condition, but one of choice, bad behavior, or happenstance. This has led to a lack of school training, prevention and emergency response. In January alone, two children with autism went missing from their schools.
  • Children and adults with ASD who suddenly flee, bolt or run (elope) because of a trigger are at greater risk of restraint. A medical code will help establish protocols that work to eliminate triggers, thereby eliminating the need for restraint.

Please take these two action steps right now:

First, sign the NAA petition in support of protecting our family members!

Second, send a brief public comment to CDC indicating your support for protecting our family members. Two or three sentences will suffice.  Simply write: “I support the ICD-9 proposal to create a medical diagnostic code for wandering.” Share your family’s personal story with the CDC. The comment period closes April 1, 2011. Comments can be submitted by e-mail to Donna Pickett, Co-Chair of the Coordination and Maintenance Committee, at DPickett@cdc.gov

The Autism Science Foundation, together with other leading autism advocacy groups, is funding the first major survey to study, quantify and categorize the experience of wandering and elopement among individuals with autism spectrum disorders through the Interactive Autism Network (IAN). The survey is expected to be released later this month. Other funders are the Autism Research Institute, Autism Speaks, and the Global Autism Consortium.

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