NAA expresses strong support of diagnostic code for seniors with ASD

The National Autism Association (NAA) today expressed its strong support of a diagnostic code for disabled minors that have a serious history of wandering and elopement from safe environments. Deaths associated with autism wandering remain a leading cause of fatalities among children and adults with an autism spectrum disorder (ASD). A similar diagnostic code has been long available to seniors with dementia.

At the end of February, two children with autism drowned within the same weekend – a seven-year-old girl, and a three-year-old boy.  In 2010, Aiden Johnson, age 3; Christian Dejons, age 6; Nathan Kinderdine, age 7; Mason Medlam, age 5; Adlai Kugblenu, age 8; Zachary Clark, age 5; Luke Selwyn, age 6; and Kaiyla Sullivan, age 7, all died following a wandering incident. All were diagnosed with autism. Individuals with autism go missing from multiple settings – home, school, daycare, summer camps, relatives' homes – environments that carry common supervision patterns.

Because physicians are largely unaware of the autism-wandering issue, critical prevention materials and safety recommendations for parents and other care providers remain unavailable. According to NAA, this absence of awareness, aid and education is contributing to the autism death toll, especially during the warmer months when more children with autism elope.

National Autism Association believes:

• 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. NAA feels 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. NAA believes a medical code will help establish protocols that work to eliminate triggers, thereby eliminating the need for restraint.

NAA reports stories from parents who have locked/secluded children in their rooms to keep them from wandering outside the home. Certain children with autism routinely attempt to escape, typically to get to something of interest such as water, train tracks, merry-go-rounds, etc. –- or to get away from something, such as noise or other stimuli. NAA believes parents, schools and other care providers need better solutions. A medical code for wandering/elopement has enormous potential to help provide safe alternatives.

According to NAA Executive Director Rita Shreffler, "Children with autism and seniors with dementia share similar wandering patterns, risks, and fatal outcomes. It is our hope that similar protections will be made available for children with autism and other disabilities. A diagnostic code is the first important step."

Not every person with a developmental disability wanders into potential danger, but for susceptible individuals, the consequences can be devastating, she says. "At-risk individuals should be afforded every opportunity for protection from harm."