Autism Disorders, Wandering, Vigilance

Another controversy has arisen in the autism "community"; this time over the issue of  wandering by autistic children.  Reports of autistic children wandering, sometimes with tragic results, appear in the media with some regularity.  In the US consideration is being given to including wandering behavior as part of an autism diagnostic code. This, apparently, has sparked a heated reaction from high functioning members of a self advocacy organization.

At the conclusion of this comment I have posted an Autism Speaks release on the issue of wandering by autistic children including the request to sign a petition in support of the proposed diagnostic code and for more research on the behaviors of wandering autistic children.  I agree with the Autism Speaks release.  Immediately following is a comment I initially posted on Facing Autism in New Brunswick on September 9, 2006 on the subject of wandering autistic children and my own personal experience the day Conor left our home without being noticed.  

Saturday, September 09, 2006

Vigilance, Constant Vigilance

A recent tragedy in Toronto has revived some terrifying memories for me. A 12 year old autistic boy fell to his death from the 16th floor of a Toronto high rise in early May while under the supervision of a caregiver who resided at that location and who has now been charged with criminal negligence causing death. The case has prompted calls from the Autism Society Canada for national standards for caregivers working with autistic persons.

I know from personal experience the challenges of caring for autistic children and the need for constant vigilance. Three years ago I was home alone on a Saturday with my then seven year old profoundly autistic son when I took a business call on my phone. I had gotten into the habit of taking such calls while listening for my son's whereabouts. This time I got too involved in the call.

When I hung up I could not find my son. I ran frantically around the house and the yard before calling 911. I was informed that he was safe at the nearby Ultramar. He had attempted to cross a busy neighborhood street oblivious to the dangers posed by traffic. A good Samaritan had stopped and helped him into the Ultramar from where I picked him up. The man was still there, waiting to ensure my son was safe, when I arrived but at that point he turned and left without waiting for recognition, reward, or expressions of gratitude.

In my entire life I had never felt such fear, guilt, relief and gratitude. The impact of these intense feelings in one short span of time was difficult to absorb. I can literally still feel them now as I type, three years later. The lessons learned will never be forgotten.

As a lawyer I would not pre-judge the caregiver in the Toronto case - or the outcome of that case. As a parent who has "been there" I know that it is all too easy, unless we want our autistic children to live imprisoned in "safe" environments, for the unthinkable to occur. There is no training that can absolutely guarantee our childrens' safety. But, to improve the odds and reduce the incidents of tragedy, there should be minimum national training standards for those who provide care for autistic persons - parents included.

...........................................................................................................................................................

AUTISM SPEAKS SUPPORTS NEW DIAGNOSTIC CODE TO PROTECT INDIVIDUALS WITH AUTISM WHO HAVE A HISTORY OF WANDERING AND ELOPEMENT

Asks autism community to sign a petition and calls on HHS Secretary Kathleen Sebelius for more research and methods of prevention to address wandering behavior that can lead to serious accidents

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.

About Autism

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.