Autism Speaks supports new diagnostic code for individuals with autism with history of wandering

NEW YORK, N.Y. (March 17, 2011) With increasing frequency, parents of children with autism spectrum disorder (ASD) report the terrible consequences that can occur when their children wander or unexpectedly run away. One mother described the recent death of her child who had wandered away from her home, despite efforts to lock doors and windows. Recognizing the seriousness and urgency of this problem, Autism Speaks, the world's largest autism science and advocacy organization, vigorously supports the proposed ICM-9-CM diagnostic code and asks the autism community to sign the petition found at http://www.change.org/naa. In addition, Autism Speaks has joined the Interagency Autism Coordinating Committee in the call for action for Health and Human Services (HHS) Secretary Kathleen Sebelius to study the causes of wandering and elopement behavior, and to develop ways of preventing its occurrence.

"Many people with ASD are unaware of the dangers associated with traffic or other unsafe conditions. When a child with autism unexpectedly wanders from the home, parents greatest concern is that their child might be harmed or die as a consequence," explained Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D. "We need to understand how to prevent wandering and how to quickly and effectively respond when a child is lost after wandering from the home or school. These measures could save children's lives."

There is little to no formal data collection on autism-specific wandering/elopement. So it is unknown how frequently it occurs, in what environments it occurs, how many deaths or injuries can be attributed to wandering/elopement incidents, why the incidents may have taken place, or what strategies may be most effective to prevent wandering- or elopement-related injuries and fatalities.

In addition to supporting this coding for ASD wandering, Autism Speaks calls on the Department of HHS to:

• Collect data on ASD-related wandering/elopement behavior

• Explore and research the potential need for and utility of an alert system similar to the AMBER alert or Silver alert, but tailored to the specific needs and characteristics of children under the age of 18 with autism who wander/elope, to help families and communities rapidly locate children with autism who have wandered/eloped

• Develop and test programs to prevent wandering/elopement incidents

• Work with the Department of Education to research and develop best practice models related to parental notification of any wandering or fleeing incidents in schools

"The issue of wandering/elopement is critical to many families and must be addressed in a manner that protects health and safety for individuals who wander," concluded Dr. Dawson. "We need to better understand the scale of the problem of wandering and develop ways of preventing it. At the same time, we need to respect the essential freedom for independence in daily life for people in the autism community. This balance between protecting people with ASD while respecting their rights is achievable."

The Interactive Autism Network will be launching the first ever major survey on wandering in the coming weeks. All survey participants must enroll at www.ianresearch.org.

Autism is a complex neurobiological disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 110 children in the United States, affecting four times as many boys as girls. The prevalence of autism increased 57 percent from 2002 to 2006. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

Autism Speaks is North America's largest autism science and advocacy organization. Since its inception in 2005, Autism Speaks has made enormous strides, committing over $160 million to research through 2014 and developing innovative new resources for families. The organization is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. In addition to funding research, Autism Speaks has created resources and programs including the Autism Speaks Autism Treatment Network, Autism Speaks' Autism Genetic Resource Exchange and several other scientific and clinical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2, which Autism Speaks celebrates through its Light it Up Blue initiative. Also, Autism Speaks award-winning "Learn the Signs" campaign with the Ad Council has received over $258 million in donated media. Autism Speaks' family resources include the Autism Video Glossary, a 100-Day Kit for newly-diagnosed families, a School Community Tool Kit and a community grant program. Autism Speaks has played a critical role in securing federal legislation to advance the government's response to autism, and has successfully advocated for insurance reform to cover behavioral treatments in 23 states thus far, with bills pending in an additional 14 states. Each year Walk Now for Autism Speaks events are held in more than 80 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org.

Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners, Chairman and CEO of the Palm Beach Civic Association and served as vice chairman, General Electric, and chief executive officer of NBC and NBC Universal for more than twenty years. He also serves on the boards of the Polo Ralph Lauren Corporation, RAND Corporation and the New York Presbyterian Hospital. Suzanne Wright has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children's Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine's National Women's Division and The Women of Vision Award from the Weizmann Institute of Science. In 2008, the Wrights were named to the Time 100 Heroes and Pioneers category, a list of the most influential people in the world, for their commitment to global autism advocacy. They have also received numerous awards such as the first ever Double Helix Award for Corporate Leadership, NYU Child Advocacy Award, Castle Connolly National Health Leadership Award and The American Ireland Fund Humanitarian Award. In May of 2010 they received Honorary Doctor of Humane Letters Degrees from St. John's University in Queens and delivered the commencement address as the first married couple to be bestowed such an honor.