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IACC Letter to Secretary Sebelius on Wandering (PDF – 85 KB)

February 9, 2011

The Honorable Kathleen Sebelius
Secretary, U.S. Dept. of Health and Human Services
Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, DC 20201

Dear Madam Secretary,

The Interagency Autism Coordinating Committee (IACC) would like to bring to your attention the issue of wandering/elopement related to ASD, a serious matter that was described in detail by members of the public at the IACC meeting that took place on October 22, 2010.1 This issue is the first of several important health and safety issues that affect people with ASD, including seclusion and restraint, bullying, abandonment, neglect,abuse, criminal justice issues and homelessness, that the committee would like to update you on in the coming months.

Stories of accidents related to children and adults with autism spectrum disorder (ASD) wandering/eloping from supervised environments are all too common. Every year, an unknown number of people with ASD are killed or injured as a result of these accidents that occur as a result of wandering/eloping or otherwise becoming lost.

For example, Mason Medlam was a tenacious five-year-old with boundless energy and a natural inquisitiveness about the world. Mason also had autism and no functional language skills. His family knew that he would wander if given the opportunity, so they were highly vigilant about his safety, installing multiple locks on every door and monitoring his every move in the house. His mother never slept more than a foot from him because she was terrified that one night he would find his way out of their home and be lost to her forever. "I knew he had no concept of danger," she said. "I knew he was a runner, and I knew he would be attracted to the most awful dangers if we didn't always know where he was."

On July 27, 2010, Mason drowned in a retention pond about a quarter-mile from his family's home after escaping through a screen left slightly ajar to accommodate a window fan. The police had been notified that the five-year-old had gone missing but were unable to locate him in time.

Mason's story is not unique. Every year, an unknown number of people with autism spectrum disorder (ASD) die tragic deaths in incidents involving wandering/elopement. Below is a sampling of fatal incidents that occurred within the past year as a result of a child with autism wandering from a safe environment:2

  • Zachary Clark, 5, drowning (August 2010)
  • Kaliya Sullivan, 7, drowning (June 2010)
  • Adlai Kugblenu, 8, drowning (June 2010)
  • Christian Dejons, 6, drowning (April 2010)
  • Aiden Johnson, 3, drowning (April 2010)
  • Luke Selwyn, 6, drowning (March 2010)
  • James Delorey, 7, prolonged exposure (December 2009)
  • Bernard Latimore, 9, drowning (November 2009)
  • Devine Farrier, 11, struck by vehicle (October 2009)

Many more individuals with autism wander or elope and thankfully are found alive. But wandering/elopement remains a critical concern among families in the autism community.

Research has shown that accidents such as suffocation and drowning, along with seizures, are among the top causes of premature death among people with ASD3 - a group whose mortality rate may be twice that of the general population according to one study.4 The causes of wandering or elopement behavior, and potential effective supports and interventions to prevent it, are unknown and need additional research. Currently, there is no formal data collection on autism-specific wandering/elopement so it is unknown how frequently it occurs, in what environments it occurs, how many deaths or injuries can be attributed to wandering/elopement incidents, why the incidents may have taken place or what strategies may be most effective to prevent wandering- or elopement-related injuries and fatalities.

A common misperception is that wandering/elopement is due to parental negligence and that the incident would not have happened had a parent "just been watching their child more closely." Parents of children with ASD who wander/elope usually take extraordinary precautions to keep their child safe. It only takes a few seconds of confusion at a family gathering or one unlocked door or window for a motivated child to take flight.

ASD-related wandering/elopement needs to be addressed. At a meeting of the Interagency Autism Coordinating Committee (IACC) on October 22, 2010, parents and advocates shared their experiences and urgent concerns with members of the committee, and the committee responded unanimously to form a subcommittee on safety and to take appropriate actions to address this issue. We, as members of the Interagency Autism Coordinating Committee (IACC), would like to recommend your consideration of the following action items, identified and agreed upon by the majority of members:

  • Collect data on ASD-related wandering/elopement behavior. While the autism advocacy community reports widespread and serious issues related to wandering/elopement based on anecdotes and informal data collection, it is difficult based on this information to ascertain the scale and scope of the problem. More formally and extensively gathered data will be imperative to understand how many individuals may be at risk, the settings and circumstances involved, antecedent behaviors, potential causes, effective preventative supports and interventions, and how often these incidents are reported to the authorities.

  • Investigate the use of a medical subclassification coding or general medical coding for ASD wandering, similar to the existing coding for dementia-related wandering that would be specific for children with ASD. Such a medical coding could be used to collect data on ASD-related wandering, establish the need for support and assistance for families affected, and help validate insurance coverage for personal locating devices and related expenses for families who are currently unable to afford them. The Centers for Disease Control and Prevention (CDC) has already submitted a proposal for an ICD-9-CM secondary diagnostic code for "wandering in conditions classified elsewhere" (e.g., autism, mental retardation/intellectual disability, certain genetic disorders). The proposal will be considered by the ICD-9-CM Coordination and Maintenance Committee at its meeting in early March, 2011.

  • Explore and research the potential need for and utility of an alert system similar to the AMBER alert or Silver alert, but tailored to the specific needs and characteristics of children under the age of 18 with autism who wander/elope, to help families and communities rapidly locate children with autism who have wandered/eloped. The AMBER alert system, a voluntary partnership in states between law-enforcement agencies, broadcasters, transportation agencies, and the wireless industry to issue urgent bulletins, can only be activated if a confirmed abduction of a child has taken place. The Department of Justice has a federal AMBER alert coordinator who assists state and local officials with development of AMBER plans. A similar alert system, called the "Silver Alert," is in place in many states to broadcast information to help locate seniors with dementia who have wandered. Currently, children with ASD who wander are not covered by either of these two alert mechanisms, but availability of such a system to families and communities could potentially play a critical role in preventing adverse outcomes when ASD-related wandering incidents occur.

  • Develop and test programs to prevent wandering/elopement incidents. HHS, the Department of Justice and the Department of Education should work closely with national medical, education and disability organizations to develop preventative information about autism-related wandering/elopement to be communicated to parents at the time of autism diagnosis. Preventative programs could include parent training, training for children with autism, teacher training, and first responder training. Currently, there is no federal funding to provide training or support to prevent autism-specific wandering/elopement. By comparison, the Department of Justice contributes over $1M annually for first responder training on Alzheimer's-related wandering and tracking technology.

  • Work with the Department of Education to research and develop best practice models related to parental notification of any wandering or fleeing incidents in schools. In order for parents to be aware of their children's potential risk and to be able to effectively find strategies to prevent wandering/elopement, incidents involving wandering and missing students should be a component of school safety planning, including parental notification protocol. HHS and the Department of Education should coordinate to develop best practice models and guidance in this area.

In addition to the above-mentioned action items, the Committee plans to engage the Alzheimer's disease and broader disability community in discussions of how the issue of wandering/ elopement can be approached in a way that balances the critical need for safety and preservation of life with the principle of self determination, in order to enhance quality of life for all people with ASD and their families.

Autism-related wandering/elopement is an urgent issue that requires federal attention. We greatly appreciate your consideration of this issue.

Sincerely,

The Interagency Autism Coordinating Committee (IACC)

Attachment: IACC Membership Roster, February 2011 (PDF – 37 KB)

References

1 IACC meeting of October 22, 2010 - Agenda, minutes, slides and archived webcast

2 Data obtained from the National Autism Association (PDF – 1.2 MB)

3 Shavelle RM, Strauss DJ, Pickett J (2001). Causes of death in autism. J Autism Dev Disord. 31(6):569-76.

4 Mouridsen SE, Brønnum-Hansen H, Rich B, Isager T (2008). Mortality and causes of death in autism spectrum disorders: an update. Autism. 12(4):403-414.

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