Advocating for Awareness of Wandering and How Avonte’s Law Can Help

Imagine celebrating a birthday party in your home. You have friends, family, neighbors, and colleagues over for a joyous occasion filled with laughter, celebration, and a relaxing evening of catching up with those you care about the most. The evening is going smoothly when all of a sudden you hear the screeching sound of car brakes in front of your house and notice your child has somehow managed to escape from the backyard and out the front door chasing after their soccer ball. Your heart immediately drops and panic begins to overtake. So many emotions are running through your mind and adrenaline has consumed you as you frantically run across the street to check on your child. The thought of entertaining your guests has now been the last thing on your mind as you are fearful to see the state in which your child is in. Thankfully you find the driver aiding your child and physically your child is well. You wipe the sweat off your brow and tears flood your eyes as you gratefully cling onto your child and thank God that they are perfectly fine. Sadly, incidents like this occur in the lives of countless families, however, this is a daily fear many parents endure with a child with autism.

Over the past decade there has been a 289.5% increase of children diagnosed with Autism Spectrum Disorder (ASD), resulting in 1 out of 68 children diagnosed yearly (Centers for Disease Control and Prevention, 2015). Unfortunately with this increase of children being diagnosed with ASD, 49% of those diagnosed wander from a safe environment at least once after the age 4 (Anderson, Law, Daniels, Rice, Mandell, Hagopian, & Law, 2012). Sadly, incidents of elopement can result in death. This horrific consequence became all too relevant for the family of 14-year-old Avonte Oquendo in Queens, New York in 2013. Video footage captured Avonte escaping the doors of his middle school with his teachers taking hours to report that he was even missing (Evans & Eyewitness News, 2014). After Avonte was reported missing, a full-fledged search went into effect that involved rescue teams and missing person posters plastered throughout Queens. After months of tireless days and nights of searching for Avonte, a parent’s worst nightmare came true when his body was discovered in the East River.

Avonte’s story was heard nationwide and with such devastating and tragic news, Senator Charles Schumer proposed Avonte’s Law in May 2014. Unfortunately, the bill did not gain momentum through the Senate until it was revised in January, 2015 (Jones, 2015). Senator Schumer proposed a grant-funded, voluntary program aimed for parents with children with autism by providing them with tracking devices along with providing trainings for law enforcement, first aid responders, school officials, clinicians, and community members to “reduce injury and death relating to the wandering and safety of individuals with disabilities” (Avonte’s Law Act of 2015). The proposed trainings would focus on how to safely interact and communicate with individuals with autism and other disabilities. Often these individuals are mistaken for acting as defiant when they do not respond to law enforcement or first aid responders, resulting in physical altercations. The projected $10 million bill is also requesting tracking devices for individuals with autism and technology to assist law enforcement, first responders, and search-and-rescue teams when locating an individuals who are reported missing. While the bill has not only reached the hands of the Senate Committee on the Judiciary, which Senator Schumer is a member of, changes are progressing in New York City because of the help of the Senator.

In 2014, Senator Schumer also went before the New York Department of Education (DOE) requesting that sounding alarms be placed on the doors of special education classrooms so incidents like Avonte would not occur again (Evans & Eyewitness News, 2014). While the DOE opposed this policy, the city council unanimously agreed and in August 2014 Mayor Bill DeBlasio signed the policy and gave the DOE a deadline of May 30, 2015 to compile a list of schools that would benefit from sounding alarms (Autism Speaks, 2014). On June 5, 2015, Autism Speaks reported 21,000 door alarms would be installed in 97% of schools assessed in New York by the end of 2015. Small strides are being made in the right direction to provide a greater awareness in the autism community even though there is still much work to be done to get Avonte’s Law established federally.

With 49% of children with ASD wandering away from a safe environment, 24% of those individuals are in danger of drowning and 65% are in danger of experiencing traffic injuries (Anderson et al., 2012). These staggering statistics are causing worry and fear among parents. A previous client that Nancy (author) worked with escaped from his home about a year ago to reach his brother. The mother stated that no one heard the child leave, and it was only when she went downstairs and saw the front door wide open that she noticed the child was missing. “I did not know where he could have been. My heart immediately stopped when I saw that front door open” (personal communication, August 8, 2015). She frantically began to look for her child and was unsure of how long he had been missing. After five minutes had passed, what seemed like an eternity for the mother, and she was still unable to locate the child, she alerted her father that her son was missing and needed help finding him. They began walking down their busy street and eventually saw the missing child almost a block away from the house heading towards another busy intersection. When the grandfather approached the child, he began to act aggressively and persisted that he wanted to go with his brother. Ever since this incident, this mother has done everything she can to ensure the child does not leave the house. However, each day is a different day with a child with autism and anything can happen.

As a community we need to rally together to decrease the likelihood of another child becoming a statistic. The numbers should cause alarm for cities and communities around the nation. Through the implementation of community-based trainings to law enforcement, school officials, first responders and community members we can provide autism awareness. This heightened awareness and planned action will provide a glimmer of hope to countless families who constantly endure fear and worry for their child. Passing Avonte’s Law will create a world where parents will no longer have to fear for the safety of their child at school or among the community. Parents can now reach out to their local leaders, law enforcements and first aid responders of the dangers children with autism can face in the event they wander from a safe environment. When we all advocate for the voices that are often unheard we can change and impact neighborhoods and communities one at a time.

 

Nancy is from Riverside, CA and Christopher is from Phoenix, AZ.  They are both graduate students at the University of Southern California, School of Social Work virtual program.  They can be reached at nancym@usc.edu and cberger@usc.edu.  They continue to advocate in their respected cities for Avonte’s Law Act of 2015.

References

Avonte’s Law Act of 2015. Code, § 163.

Anderson, C., Law, J. K., Daniels, A., Rice, C., Mandell, D. S., Hagopian, L., & Law, P. A. (2012). Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics, 130(5), pp. 870-877.

Autism Speaks. (2014). NYC Mayor De Blasio Signs Avonte’s Law.  Retrieved from www.autismspeaks.org/news/news-item/nyc-mayor-de-blasio-signs-avonte039s-law

Centers for Disease Control and Prevention (CDC). (2015). Key findings: Trends in the prevalence of developmental disabilities in U. S. children, 1997–2008. Retrieved from www.cdc.gov/ncbddd/developmentaldisabilities/features/birthdefects-dd-keyfindings.html

Evans, D., & Eyewitness News. (2014). New York City council hears opposition to Avonte’s law. Retrieved from http://7online.com/news/council-hears-opposition-to-avontes-law/109529/

Jones, A. (2015). Avonte’s law reintroduced. Retrieved from http://www.rootedinrights.org/avontes-law-reintroduced/

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