Dear Editor,
We are writing to extend our appreciation of your coverage of the tragic death of Avonte Oquendo, a young man with autism from New York, and the legislative initiatives that are taking place in his name (NBC News, January 29, 2014). Thank you for providing a clear and succinct overview of “Avonte’s Law” as it went quickly from Senator Charles Schumer’s proposal to a promise of funding from the U.S. Department of Justice.
When Avonte wandered from his New York school in October, it triggered a massive search in the New York tri-state area. Over three months later, his disappearance came to a tragic and fatal end when his remains were found in the East River. However, it was the lengthy and extensive search for Avonte that has garnered public attention and now, legislative support. This heartbreak has been the catalyst for change. Senator Schumer pointed to the fact that the Department of Justice offers $1 million a year in funding for first-responder training on wandering and tracking technology for Alzheimer’s, while no equivalent funding exists for comparable behavior in autism. We applaud him for identifying this gap in legislation and for suggesting a similar program for families with children with autism. The U.S. Department of Justice quickly promised to provide such funding, and we are encouraged by the quick turn around.
“Wandering,” “bolting,” or “elopement” is a behavior of concern for many who have a family member with autism. A study published in the journal Pediatrics, found that 49% of children with autism had at least one attempted elopement (e.g., bolting, wandering) after age four as reported by their caregivers. Sadly, since 2011, 41 American children with autism have died after straying from their caregivers. Data also indicate that 90% of fatal wandering is due to drowning. Given these data, and the heart-wrenching loss that ensues, it is clear that public awareness campaigns and funding to ameliorate this problem is not only long overdue, but quite necessary.
While the quick legislative response was wonderful to see, we hoped to see continued coverage of “Avonte’s Law” as it developed. Ongoing coverage would have demonstrated a true grasp of the severity of this issue and a dedication to helping increase awareness of a serious issue in the autism community. Additionally, continued coverage of the legislation surrounding this case would have helped many families facing similar challenges. A recent Internet search found only a single story which touched upon how families may apply for the wandering devices promised through this legislation. In the future, we would encourage media outlets to stick with stories such as these as they can serve a critical role in disseminating this important information to the families who need it the most.
These most current legislative developments are certainly promising; however, it is also important to continue identifying other ways that wandering can be prevented, as it is such a grave and potentially deadly issue. Currently, there is a limited amount of guidance, training and resources available to help in situations where an individual with autism strays from his or her caregiver. Research has been conducted to teach individuals with autism to be able to let someone know when they are lost, but the research is scarce (Taylor, Hughes, Richard, Hoch & Coello, 2004; Hoch, Taylor & Rodriguez, 2009). The Department of Education offers no protocol, and there is no mandate in place to notify parents of elopement (or attempts). Also, the Amber Alert system can only be used in cases of potential abduction, and thus, cases of elopement do not qualify. It is our sincere hope that all lawmakers will recognize the urgency of this issue and continue to develop legislation and funding measures to help families and children with autism.
Elizabeth Callahan, BA, BCaBA and Mary E. McDonald, PhD, BCBA-D
Association for Science in Autism Treatment
