Below is a written statement from the National Autism Association to the Interagency Autism Coordinating Committee for their meeting held on January 12, 2016. The statement follows a recent tragedy involving a five-year-old child with autism who wandered away from a New Year’s Eve gathering in Pennsylvania, and what NAA describes as the deadliest year on record for autism and wandering since beginning its data collection in 2009. For more information on autism and wandering, please visit http://awaare.nationalautismassociation.org.
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Statement From the National Autism Association
Interagency Autism Coordinating Committee Meeting, January 12, 2016
Introduction
Since 2008, the National Autism Association (NAA) has dedicated the vast majority of its time and resources to autism-related wandering prevention and response. NAA sounded the alarm in 2010 before this Committee and we are grateful for your time and consideration. With your help over the last several years, our community has been able to secure many resources, including formal data on elopement, a medical diagnostic code, and a safety subcommittee under the IACC umbrella, albeit short-lived.
As an organization, we’ve recorded and analyzed close to 600 elopement cases, provided over 20,000 safety boxes to autism families across the country, trained law enforcement and child protection agencies in the U.S. and Canada, provided over 1000 safety toolkits to teachers, published a white paper on lethal outcomes, funded research on contributing factors, created the AWAARE Collaboration website, provided $100,000 in Project Lifesaver funding for law enforcement agencies, and the list goes on.
Our team has worked around the clock for many years with great compassion and urgency. Please understand our sadness in knowing that 2015 was our community’s deadliest year on record.
2015 Data
Over the last year, the National Autism Association recorded 32 wandering fatalities in individuals with an Autism Spectrum Disorder (ASD), and over 200 missing person cases. The vast majority of fatalities were caused by drowning, followed by traffic and train-related fatalities, hyperthermia, and two cases of mistaken home invasions after the individuals walked away from their respective group home into nearby residences.
2011-2015 Data
Our data indicate that for children with autism age nine and younger, wandering cases ended in death 42% of the time. Based on our data, increased risk for wandering incidents continue to be during the spring and summer months, during holiday parties and outdoor gatherings, after a move to a new home/school, public outings, transitions, and visits to non-home settings. For families still unaware of this information, prevention may be more difficult.
In terms of safeguards, parents report that door alarms, stop signs, identification, swimming lessons, the “tag” approach, and tracking devices are the most useful short-term tools & strategies for wandering prevention. NAA continues to encourage families to use a multi-layered approach, as no one tool is 100% effective.
Education Is Crucial for Prevention
The National Autism Association closely reviews each fatality to determine what tool or strategy may have prevented the incident. Because many of these individuals go straight to water with little time for successful search and rescue, prevention is key. Education is the first step, and must take place before any safeguard is considered. Yet, many families, law enforcement agencies, educators, and clinicians are still largely unaware of this issue.
Education Must Start At Diagnosis
The American Academy of Pediatrics (AAP) has developed wandering prevention literature for autism families, but we believe this information is being underutilized. Every autism family should have access to this information at diagnosis.
Federal Action Is Needed
Over the last two years, NAA has worked on federal legislation to combat wandering deaths. Avonte’s Law echoes what’s already in place for the Alzheimer’s Community. It will also serve to help educate first responders, educators, and clinicians. In addition, the IACP Alzheimer’s Initiative under the International Association of Chiefs of Police is an impeccable model that should be available for the ASD community.
Our Request to IACC
NAA believes we must approach the wandering issue with consistent urgency and remain proactive. We urge IACC members to re-engage the American Academy of Pediatrics on the topic of wandering prevention. With existing AAP literature, it’s a matter of reaching families at diagnosis. All families deserve to be told that wandering can happen, when it’s more likely to happen, and the steps they can take to prevent it from happening.
On the response side, federal action is needed. Those with autism deserve the same resources already available to those with Alzheimer’s Disease. We ask for IACC’s participation and formal support of Avonte’s Law and the IACP model.
If the Committee would like further information on the issue of autism-related wandering, NAA is available for consultation or a presentation at an upcoming meeting. We thank you for your ongoing work and consideration.
Sincerely,
The National Autism Association
