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National Autism Assocation Receives $50K Grant from American Legion Child Welfare Foundation To Prevent Death by Wandering

NAA logo NIXA, Mo., March 1, 2011 /PRNewswire-USNewswire/ -- The National Autism Association (NAA) today announced its receipt of a $50,000 grant from the American Legion Child Welfare Foundation (CWF) to disseminate the "Big Red Safety Box" to autism families nationwide.  The effort was created to combat the rise in wandering-related injuries and deaths in the autism community.  

"We are very happy to make these tools and resources available to those caring for individuals at risk of wandering away from safe environments," said NAA board chair and parent Lori McIlwain.  "The generosity of the Child Welfare Foundation will help prevent the horrific outcomes that have devastated so many families of children who have a tendency to wander."

While there has been no official tracking of wandering-related incidents involving individuals diagnosed with autism, in an online poll conducted by NAA in 2007, 92% of parent respondents said their children with autism have a tendency to wander.  A 2008 study from Denmark found that the mortality rate within the autism population is twice as high as in the general population. In 2001, a California research team attributed elevated death rates among people with autism in large part to drowning. Drowning, prolonged exposure, and other wandering-related factors remain among the top causes of death within the autism population. "People with wandering tendencies can be gone in the blink of an eye despite even the most diligent supervision," said Ms. McIlwain.  "It is our hope that these safety tools and resources will better prepare caregivers to ensure that they do not experience the devastation that can result from wandering-related incidents."

The American Legion Child Welfare Foundation was founded in 1954 to provide other nonprofit organizations with a means to educate the public about the needs of children across the nation.  To date, they have provided over $11 million to help children in need in this country.  According to CWF Executive Secretary Robert Caudell, "The National Autism Association safety tool boxes will provide invaluable resources to families for keeping their loved ones safe.  We are excited about the opportunity of sharing these lifesaving tools with families affected by autism."

The opening of the application period will be announced by the organization in the coming months. In the meantime parents are encouraged to join NAA's wandering prevention group on Facebook http://www.facebook.com/pages/Autism-Related-Wandering-Safety-and-Prevention/122387477785399?ref=ts. Information on wandering prevention can be found at awaare.org.

For more information about autism, visit www.nationalautismassociation.org.

For more information about CWF, visit http://www.cwf-inc.org/.    


Michael Kohloff

I have been studying Chronic Anxiety disorders since 2004 & have had a type of "wandering disorder" with ADD, Agoraphobia, & other anxiety issues. Since grade school, this wandering has expressed itself in restlessness & easy distraction.
As a working adult: an inability to stay on task & an irresistible need to walk around when under stress. In the course of eight years & due to great stress, I moved to 14 cities in 7 states with a family. This of course caused even greater stress.
When I successfully addressed my Anxiety issues with natural therapies, this extreme behavior gradually ceased along with the other disorders.
The only reason I openly confess to this embarrassing history is to help you believe that I understand Anxiety issues from the inside out.
I strongly believe that this wandering behavior is Not a product of Autism, but rather of Anxiety caused by a "medically unrecognized" condition called Pyroluria. It is unrecognized for the same reasons that vaccines are not recognized to be the cause of Autism, Big medical profits.
Many sources state that about 30% of the Autistic & 10% of the general population have this very complicating factor. I believe it to be at least 20% of the population & probably at least 70% among Celebrities, the Incarcerated, & Alcoholics. Many people belong to all 3 groups.
Pyroluria leads to emotional volatility, irritability, & intolerance of noise & all stress, the urge to self medicate & many other problems.
Parents would do well to research the symptoms of Pyroluria such as lines on the fingernails, very dry skin, crowded teeth & more.
I have found that Pyroluria is definitely not genetic any more than is Autism. It is a stubborn, multi-resistant infection, but reversable.
Temple Grandin's need for the "hug machine" was a self comforting response to severe Anxiety attacks, not Autism.


I hope all of the sad victims of "death by wandering" are listed on vaers as vaccine deaths.Too often I hear autism isn't so bad, no one dies...of course they do.

Marie-Anne Denayer, M.D.

There is nothing that would resist being removed if Stephanie decides she does not want to wear it.
If she has any skin lesion, she will ask for a band-aid, however, withim 30 seconds, it is gone. To this day, I marvel at the fact that Stephanie put up with a peripheral catheter in either hand or arm for the intraveinous administration of antibiotics to treat her CNS Lyme disease, this for a total of 3 months. I have always assumed that it made her feel so much better, that she did put up with it.

A service dog would be great. Some of my MS patients have dogs to help them with ADL's, to help support them when they walk, etc...they are amazingly smart and well behaved when they come to the office.
The problem though is that Stephanie is extremely allergic to dog and cat dander.

Maurine Meleck

This is terrific news. Congratulations to all those in NAA who worked hard to make this happen.

Becky H-A

Several communities near me use CareTrak. The bands can be worn on ankle or wrist and must be cut off (hopefully, sharp scissors are not near our kiddos for them to attempt the removal themselves). I've been in touch with our local township and police dept to urge them to implement CareTrak. I like that this company offers not just the locater device and bands, but also a parent can buy a home use perimiter device that will alarm when the child exceeds a set radius-something the LoJack (Project Lifesaver) does not have. My child moves fast, especially on a bike, and always wants to be outside. I need to start looking for him as soon as he ventures past our block, and I would also need to be made instantly aware when that occurs if my back is turned. We are not too far from the bike trail/river so if I know when he's gone too far I can find him before he reaches water, not after. When I talked to LoJack last summer, the representative I spoke with had no idea their competition had a perimeter alarm device, nor any real comprehension of why I felt one was so important to have. He said that LoJack did not have plans to make a perimiter alarm. I'd take Project lifesaver (LoJack) over nothing, but given the success neighboring communities have had with CareTrak and the option of having that perimeter alarm, CareTrak is what I am hoping my community puts in place. Not sure of the cost differences in locator equipment purchase for a community, but I do know the parent can change the bands for CareTrack whereas only a trained technician can change the LoJack bands. For a kid adept and motivated at cutting off bands, perhaps LoJack would be a better choice as it may be more tamper proof, but I am just speculating.


Thank you American Legion Child Welfare Foundation!


Marie -Anne, that is the exact thing I was worried about with my sensory overloaded often naked nonverbal escape artist too, he hates bracelets ankle bracelets, belts. Etc....project lifesaver is the best option it doesn't rely on cell towers/or batteries but it only worsk if your loved one is ok to keep it ON..that is why we are working hard to finally get our service dog home, to be able to track!

Marie-Anne Denayer, M.D.


Tracking equipment is great, however how does one expect a child with autism to wear it?
We looked at those 15 years ago...unless new systems have become available in the interim, Stephanie would never have kept the device on.

We were always fortunate in that Stephanie figured out how to float and do the doggy paddle at age 18 months.
She was however an expert escape artist, observing our every move and her siblings' whereabouts, always grasping that split second of inattention on our part to make a run for it.
We called the cops so many times....We were always fortunate that a neighbor would see her and bring her home.

I posted the following interventions we had to do at our house to keep Stephanie safe after the drowning accident of the little girl in Oklahoma

What we did to prevent escapes?
- Hide all the keys in a safe
- Double bolts on the doors leading outside (Don't forget the basement!
- Bolts on all the windows (we had to explain to the fire department why we had to resort to shut windows to keep someone from getting OUT. Most people usrd the window bolts to keep thieves from getting IN)
- Installed an 8 foot fence around the backyard and pool.
- Notify the neighbors to look out for her.
- Contacted the police Dept to make them aware of Stephanie's situation, so when we had to call them they knew immediately what was going on.
- We live on a dead-end street which is a blessing.
The police installed a sign "Deaf child in area" at the entrance to our street.
- Similarly, the fire Dept knew of Stephanie's situation.

Stephanie would never put up with the tracking devices that are available for "wanderers of all ages". It might however be an option for the higher functioning kids.

All these interventions add up in terms of cost. We are fortunate we could afford them, but I am sure that for many families, financial assiatance would be more than welcome.


That's great. I hope NAA uses the grant money to help start project lifesaver programs in communities that are lacking.. I think it costs about $4750 to start a program, tracking equipment and training of fire and police personnel.



Well, at least someone's got our back! The IACC definitely does give a carp!

Thank you!!!

Marie-Anne Denayer, M.D.

Thank you American Legion Child Welfare Foundation.

Morality Check

Thank you American Legion Child Welfare Foundation.

No thank you Interagency Autism Coordinating Committee.

Our children are more likely to get help from those not directly involved in autism than from those who pretend to be.

sneaker city

Thank you, American Legion! Obviously they understand the magnitude of the problem, as opposed to the IACC.

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