The Interagency Autism Coordinating Committee Meeting is taking place now.
You can watch the meeting live at http://videocast.nih.gov

The following statement was submitted to the IACC from the National Autism Association for today's meeting.

Statement From the National Autism Association | Interagency Autism Coordinating Committee Meeting, Washington DC | April 30, 2010

EXTERNAL CAUSES OF DEATH AMONG CHILDREN & ADULTS WITH AUTISM SPECTRUM DISORDERS

Previous requests from the National Autism Association have primarily focused on an increase of environmental-based research and the overwhelming need for biomedical-treatment funding,
the acknowledgement of underlying pathologies, and the study of vaccinated versus unvaccinated populations.
Our position on these issues remains the same.
Today, however, we wish to address the external causes of death among our autism population, and how its lack of research
has led to an absence of preventative measures, mass awareness, resources and emergency interventions.

Yesterday, Erik Lippmann, a 30-year-old man with autism, was found dead after wandering from his home in Santa Cruz.
Last week, Aiden Johnson, a three-year-old boy with autism, drowned in a creek near his home in Arkansas.
Two weeks prior, Christian Dejons, a six-year-old with autism, was found dead in a pond.
Before that, James Delorey, a seven-year-old with autism, wandered from his home in the frigid temperatures and was found two days later.
He died shortly thereafter.
Bernard Latimore, age nine, died in a neighbor’s pool.
Devine Farrier, age 11, was struck and killed by a truck. These are just a few of the recent deaths related to wandering.

In 2008, Danish researchers found that the mortality rate among the autism population is twice as high as the general population.
In 2001, a California research team found that elevated death rates were due to seizures, respiratory problems, and gastrointestinal bleeding.
Deaths were also attributed in large part to suffocation and drowning.
The National Autism Association is working to address the external factors in particular, most notably suffocation due to improper restraint procedures and drownings.
Drownings, prolonged exposure, and other wandering-related factors remain among the top causes of death within the autism population.
The fact that we are unable to provide data showing how many adults and children die each year due to wandering is why we are here today.
We can assure you that deaths are increasing each year, but we have no research to back our claims.
Without hard data, it has been difficult to gain the attention of lawmakers, government health agencies, media and law enforcement agencies.

Wandering-prevention materials distributed by pediatricians to caregivers is imperative.
Assigning a subclassification ICD-9 code for autism elopement could help provide insurance coverage for safety devices, raise the
seriousness level of the condition, and open up critical dialogue between physicians and caregivers.
Minors with autism are not covered under the AMBER Alert or Silver Alert systems.
Because AMBER Alert criteria only include abducted children, it is our goal to revise the guidelines to include any child with a life-threatening condition.
We need funding for Project Lifesaver tracking equipment, law enforcement training, access to swimming lessons and home security items.
We need awareness efforts, and a better understanding of how and why these deaths are happening, how many times they’ve happened, and how much they may be increasing.

We also need to understand that children like Aiden were in the care of his grandparents, other children were in the care of their parents,
and yet others died after wandering from their summer camp or school.
Our children are not wandering because of neglect or bad parenting, they are wandering because they have a medical condition.
They die alone, and they die terrified—many without a voice to call for help.

If we’re all here to support research that increases progress, prevention, services and quality of life, we must ask ourselves how much we’re doing to save lives.
The National Autism Association respectfully requests your thoughtful review of the autism elopement issue, and your help in seeking answers that could help prevent more deaths.


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