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IAN Elopement and Wandering Questionnaire

Date First Published: March 29, 2011
Date Last Updated:  November 2, 2011

Update: The IAN Elopement and Wandering Questionnaire is now closed.

Mother Holding Daughte TightThe Interactive Autism Network (IAN) is launching the nation’s first major survey on wandering and elopement in autism spectrum disorders. This crucial issue, identified as a top priority by autism advocates, has not been the subject of much research in the past. The new survey will provide vital information to families, advocates, and policy makers alike as they work to keep individuals with ASDs safe.

Individuals with autism spectrum disorders (ASDs) of all ages may wander, elope, or “bolt,” putting themselves at risk of trauma, injury, or even death.1 There have been too many tragic headlines:

Girl, 7, who Drowned in Lawton Had Struggled to Overcome Autism 2

Autistic Boy Hit and Killed by Truck 3

Coroner: Missing SC [Santa Cruz] Man [With Autism] Drowned in Ocean 4

Families whose own loved one with ASD is prone to leaving safe spaces live in dread of outcomes like this, often taking expensive and exhausting measures to thwart elopement attempts and keep their child, of whatever age, safe.

Although similar behavior in Alzheimer’s disease has been studied,5 6 7  virtually no research has been done on this phenomenon in ASD. There is little information available to guide parents and caregivers trying to keep loved ones safe, or to aid advocates who are trying to convince policy makers that this is a major problem for families.

Now, funded by the Autism Research Institute, the Autism Science Foundation, Autism Speaks, and the Global Autism Collaboration, the Interactive Autism Network (IAN) is launching a national survey on Elopement and Wandering that will help researchers begin to document and understand elopement behavior in ASD.

The Elopement and Wandering Questionnaire will help researchers begin to answer important questions. How often do individuals with ASD attempt to elope, and 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 to support their families?

Who Can Participate?

To understand elopement and wandering behavior in ASD, researchers will need information from both families of individuals who do and do not wander, elope, or “bolt” from safe spaces. Comparisons are needed in order to fully describe who is at risk, so we ask everyone in the U.S. autism community to participate in the survey whether or not their child or dependent adult engages in these behaviors.

To take the survey, you must be:

  • Enrolled in the Interactive Autism Network (IAN) project
    To register, visit: www.ianresearch.org
  • The parent of a child with ASD (age 0-17) or the guardian of a dependent adult with ASD (age 18 or over)

If you are already participating in IAN Research, the Elopement and Wandering Questionnaire should now appear in your Family Profile under the name of your child or ward with ASD. Simply log in at www.ianresearch.org. (Remember: if you’ve forgotten your password or IAN User ID, click on “forgot my password or IAN ID.”)

If you have any questions, please contact the IAN Research team at 866-348-3440 or ian@kennedykrieger.org. We are here to help.

Our Heartfelt Thanks

We would like to express our appreciation to the autism advocacy organizations that have identified elopement as a key issue for families; provided their input during survey development; and funded the research: the Autism Research Institute, the Autism Science Foundation, Autism Speaks, and the Global Autism Collaboration. Without their support, this survey focusing on elopement and wandering in ASD would not have been possible.

Additional Resources

References

  1. McIlwain, L., & Fournier, W. (2010). Wandering & autism: The need for data and resources. National Autism Association. Retrieved March 22, 2011.
  2. Medley, R. (2011, February 23). Girl, 7, who drowned in Lawton had struggled to overcome autism. NewsOK. Retrieved March 22, 2011.
  3. KIRO Radio staff. (2009, October 12). Autistic boy hit and killed by truck. Retrieved March 22, 2011.
  4. KSBW.com. (2010, April 30). Coroner: Missing SC [Santa Cruz] man [with autism] drowned in ocean. Retrieved March 22, 2011.
  5. Rolland, Y., Andrieu, S., Cantet, C., Morley, J. E., Thomas, D., Nourhashemi, F., et al. (2007). Wandering behavior and Alzheimer disease. The REAL.FR prospective study. Alzheimer Disease and Associated Disorders, 21(1), 31-38. View Abstract
  6. Algase, D. L., Antonakos, C., Beattie, E. R., Beel-Bates, C. A., & Yao, L. (2009). Empirical derivation and validation of a wandering typology. Journal of the American Geriatrics Society, 57(11), 2037-2045. View Abstract
  7. Cotter, V. T. (2007). The burden of dementia. The American Journal of Managed Care, 13 Suppl 8, S193-S197. View Abstract

 

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