On Tuesday, autism and missing person advocates gathered on Capitol Hill for a briefing on elopement in children and adults with autism. The briefing, sponsored by Senator Chuck Schumer and hosted by the National Autism Association, gave advocates a chance to address the need for Avonte’s Law. If passed, Avonte’s Law, introduced by Senator Schumer, would authorize $50 million over five years to be distributed by the Attorney General with the purpose of reducing the risk of injury and death related to wandering, as well as safeguarding individuals with disabilities during interactions with law enforcement.
Wendy Fournier, president of NAA, pushed for the briefing and the need for movement on Avonte’s Law. “This is a common-sense bill that echoes many of the same resources already in place for the Alzheimer’s community,” she said.
At the briefing, Bob Lowery of the National Center for Missing & Exploited Children, spoke about missing person cases involving children with autism, as well as the 85 related deaths over the last several years. Lindsay Naeder of Autism Speaks spoke about the need for more community resources, and access to lifesaving tools for autism families. Scott Badesch from the Autism Society provided stories and insights into the need for police training, and how to interact with individuals with autism, as well as the need for support for adults and children on the spectrum and their caregivers. Scott Martin of the SafetyNet division of Lojack discussed the cost of past search and rescue efforts and how lifesaving tools could prevent the need for extensive searches and save lives.
Lori McIlwain of the National Autism Association opened the discussion with the names of children and adults with autism who have died after wandering away, and the struggles that families face to keep their children and adults safe in the home, at school, and in public places. “Families are in need of resources and support. It’s time for federal action, community programs, and nationwide police training,” she said. Later in the briefing, McIlwain stated, “If the autism community can come together on this issue, so can lawmakers. Children and adults who cannot speak, recognize danger, or understand ways to keep themselves safe are the most vulnerable people living in the country today. We ask you to support them by supporting this bill.”
Danny Oquendo, brother of Avonte Oquendo, shared a moving video message with attendees asking for their support of Avonte’s Law. “I believe if an act similar to Avonte’s Law would have been passed two years ago, Avonte would still be here today.”
Amanda Burstein of the International Associations of Chiefs of Police ended the briefing by discussing existing federal models for the Alzheimer’s Community, and posed the idea of a similar model for autism.
Wandering behaviors are considered common and short-lived in toddlers, but may persist or re-emerge in individuals with disabilities. According to a 2012 study released by the journal Pediatrics, 49% of children with autism wander/elope from safe supervision.
Schumer’s legislation titled “Avonte’s Law Act of 2015” addresses urgent safety issues affecting individuals with autism an other disabilities.
The law is named after Avonte Oquendo, a 14-year-old boy with autism who vanished from his New York City school in 2013. His body was discovered three months later in the East River.
According to the National Autism Association, 15% of all autism-related wandering cases in recent years have ended in death. For children with autism ages 9 and younger, the number goes up to 42%. “For younger children on the spectrum who are missing, the risk increases significantly,” says Fournier.
Briefing attendees included lawmakers, parents, law enforcement officials, and other stakeholders. The event was coordinated by the National Autism Association, Safeminds, The Autism Society, Autism Speaks, and The Arc.
ABOUT THE NATIONAL AUTISM ASSOCIATION:
In response to the rise in wandering incidents and fatalities in the autism community, the National Autism Association began working on the wandering issue in 2007.
Since that time, NAA has analyzed over 400 wandering cases, donated $100,000 in Project Lifesaver tracking equipment, provided more than 17,000 safety boxes to autism families across the country, and created AWAARE.org. At NAA’s request, a medical diagnostic code for autism-related wandering went into effect in 2011. The group also requested the Pediatrics study.
For information about wandering prevention and prevention resources, visit http://awaare.org.