Preventing autism wandering deaths: Mason Alert, tracking, medical code proposed

Children with autism are often prone to wandering, fascinated by water, and unaware of danger. Many of these children are also impulsive and nonverbal. This combination of characteristics can be fatal.

In 2010, at least nine children with autism died in the U.S. after wandering, all of them by drowning. Already in 2011, at least three children with autism have drowned in the U.S. after wandering. On March 30, a child with autism in Victoria, Australia died after being struck by a train. He wandered from home. On April 3, a child with autism in Quebec, Canada went missing after wandering and has not been found. The search has focused on a river.

“It’s just terrible to watch it happen over and over again. We relive the loss of Mason each time,” said Sheila Medlam, whose 5-year old son Mason drowned in a pond after wandering away from his house in Colwich, Kansas July 27, 2010.

In an interview with Examiner.com, Medlam talked about the life of her son Mason, the joy he brought her and her family, his tragic death, and efforts to raise awareness to prevent future wandering fatalities.

Medlam has been raising awareness of autism wandering in the months since Mason’s death. “Losing Mason was like losing the other half of my soul,” Medlam told Examiner.com. “From the very beginning we shared his story with everybody because we didn’t ever want it to happen to anybody else and we wanted to give some meaning to something so horrible.”

According to the National Autism Association, 92 percent of parents surveyed in 2007 said their children with autism were at risk of wandering. In 2008, Danish researchers found that the death rate among people with autism was twice that of the general population. Fatal incidents involving wandering and autism often involve drownings after young children wander from home, school, or day care. In 2001, a study on people with autism in California found that drowning that often occurred after wandering led to increased death rates among those with autism.

Mason Alert

After Mason's death, the Medlam family set up the Mason Allen Medlam Foundation for Autism Safety and collected 100,000 signatures to propose a “Mason Alert” program that would consist of an alert that would be triggered when a child with autism goes missing, and a registry of children with autism and other disabilities.

Medlam is advocating for a law that would establish a Mason Alert similar to the AMBER Alert and Silver Alert systems, or to include criteria for autism wandering into the AMBER Alert, which currently only covers abducted children. Such an alert would be issued for people with developmental or cognitive disabilities who are susceptible to wandering and do not recognize danger.

“We want that alert to cover anybody of any age with a disability that leaves them cognitively impaired and leaves them vulnerable to being out in the world on their own,” said Medlam. “That would include Alzheimer’s, Down Syndrome, autism, and brain injuries. When our children go missing they’re in imminent danger of death.”

The second component of the Mason Alert would be a registry of children with autism or other disabilities at risk for wandering. The registry would include contact information and a photo, interests and fascinations, locations of nearby hazards such as pools and ponds, how children react under stress and how to approach them, and if they have any serious health concerns.

Interagency Autism Coordinating Committee and HHS

Medlam told her story to the federal Interagency Autism Coordinating Committee last October. After that meeting, the committee formed a safety subcommittee and asked Health and Human Services Secretary Kathleen Sebelius in a letter to investigate wandering prevention programs and best practices.

The letter requests that HHS conduct research on wandering data, investigate the need for a new medical diagnosis code for wandering, and examine the need for an alert for children with developmental disabilities who wander. Members of the IACC are expected to meet with the Department of Justice this summer to develop and implement strategies to prevent wandering.

Some of the issues are already being examined. In March, the Interactive Autism Network initiated a study funded by advocacy groups to determine the prevalence of wandering. The Centers for Disease Control’s National Center for Health Statistics is reviewing a potential medical diagnosis code for wandering. Such a code could enable insurance to cover tracking devices and save lives by increasing awareness among parents, medical and educational professionals.

At the IACC meeting in Washington, D.C. April 11, Lori McIlwain of the National Autism Association spoke about the need to take action to prevent wandering. “As summer approaches we anticipate more of these deaths,” McIlwain told the committee. She said the NAA represents those with the most severe forms of autism, and called for a “crisis-level response specific to their needs” to protect the most vulnerable. McIlwain called for safety measures including a diagnostic medical code for wandering:

“The autism we represent is a very specific kind. Each time IACC holds a meeting, our autism is unable to physically be here and have any sort of tangible presence. Our autism does not have a microphone, seat at the table, or the opportunity to raise its hand. Our autism is the one that does not speak or respond; play or socialize. Our autism wanders off and drowns; gets left in a hot van; is restrained until suffocated; disfigured after bolting into traffic; dead after two days in the cold…Our autism defines human beings – young and old -- who are severely impacted, and the families who live in constant prevention and survival mode.”

However, the IACC made recommendations to HHS last year, and the pace to get action implemented at the national level has been frustratingly slow for Medlam and other advocates, so Medlam is starting locally. “I am tired of reading my son’s story over and over again, this happening to other families,” said Medlam. “It makes me sick. It makes me relive that day. I don’t want to have to do that.”

Medlam is working with autism awareness groups and police in Kansas to implement two programs in the state that have a track record of protecting children who wander: the Take Me Home Program and Project Lifesaver. She hopes Kansas can ultimately be used as an example for other states.

Every Parent’s Worst Nightmare

Medlam lived through every parent’s worst nightmare last July. “I got a phone call that would eventually destroy my life,” she said. Mason was missing.

On July 27, Medlam went to work as usual. Her adult daughter was watching Mason. Medlam and her husband Kenneth had been extremely cautious about securing the house because they knew Mason had no fear and had an uncanny ability to open locked doors.

However, on this day the temperature reached 105 degrees and the air conditioner was broken, so Sheila had bought some fans. Mason got past one of the fans on the windowsill and climbed out of one of the windows.

After getting the call, Medlam raced home, calling 911 and several neighbors, imploring them to check a nearby pond that she knew would attract Mason. But no one checked the pond.

At the October 2010 IACC meeting, Medlam emotionally recounted what happened next.

"I went directly there, got out of my car and looked at the water. The first thing I saw was something pink floating in the water. For an instant, I thought it was a piece of paper, but then I knew. I just started screaming Mason’s name over and over as I dove in and pulled him out. I threw him on the bank. His lips and nose were blue and his eyes were closed. I started CPR and all that came out of his mouth was water. A policeman was about a hundred yards from me. He had drove past the pond and was headed up to a neighbor’s house. He raced over and took over CPR. I ran back to my car screaming, ‘NO, no, no, no….’ I knew then that Mason was gone forever.”  

Medlam said a registry would have saved Mason’s life by identifying his attraction to water. Authorities would have likely searched around the nearby pond. Instead, Medlam says, they didn’t take her request seriously.

“By the time I pulled him out of the pond, he had only been gone for a few minutes. The police had actually been there for about 15. At any point if they had gone to the pond they could have saved Mason.

“Every morning when I wake up, the first image in my mind is Mason’s body floating in the pond and the last image when I go to bed is of my son’s body floating in the pond. This isn’t the face that I see when I close my eyes,” Medlam said as she pointed to a photo of Mason. “It’s his body. And that’s a horrible thing for any parent to have to go through.

“It only took one second for Mason to be taken from me forever. We were very hyper vigilant. We had three locks on every door. We took every precaution. I never slept more than a foot from him for five years his whole life. One day a million things went wrong. In one second.”

Take Me Home Program

Take Me Home is a police program developed in conjunction with the Autism Society’s Safe and Sound Initiative to protect people who are non-verbal or have other special needs. Families submit photos, descriptions, and contact information of at risk people so if they become missing, they can be identified.

Officer Jimmy Donohoe of the Pensacola, Florida Police Department created the program after attending an Autism Society meeting on wandering in 2003. Donohoe, who has a son with autism, suggested bracelets, necklaces, and shoes with names and addresses but none of those solutions worked for everyone.

“I left there feeling really inadequate for what we had just talked about and that’s when I got the idea for the Take Me Home program,” Donohoe said. “It would be at our fingertips that we could identify people that are nonverbal or help out in that situation. Subsequently we have had autism training here at the police department that has been a major help for us.”

If a child is non-verbal and an officer finds him or her, the officer enters a description of the child. Photos come up in a police car or at a station, and contact information is available so that the officer can take the child home once the child is identified.

Donohoe said the program also works in reverse. “If Sheila had discovered her child was gone she could have called them and said, ‘My son is in the Take Me Home Program.’”

Medlam said her son would be alive today if authorities searching for Mason had information about Mason’s attraction to water. The questions in the Mason Alert registry have since been implemented into the Take Me Home program.

Take Me Home is now used by police in Pensacola, San Diego and more than 250 other police departments across the U.S., Canada, and England.

Project Lifesaver

Project Lifesaver is a tracking program designed to locate missing adults and children who wander due to Alzheimer’s, autism, and other related conditions. The program provides people at risk for wandering with transmitters worn on the wrist that provide their locations.

Project Lifesaver is used by more than 1,200 agencies across the U.S., Canada, and Australia, and has performed more than 2,300 successful searches.

The Montgomery County, Maryland Police Department implemented Project Lifesaver in 2005. Officer Laurie Reyes runs the program for the county. Reyes says in Montgomery County, incidents of children with autism wandering result in a search about twice a month, occur most often during warm months, and are on the rise in general.

Reyes told Examiner.com that Project Lifesaver is an excellent program but it should be part of a layered approach. “We have had a lot of successful searches, but when it comes to autism specifically, sometimes it can be difficult to keep the bracelet operational,” Reyes said. “So it has to be a string approach, meaning that the community, caregivers, and first responders are educated, so everyone works together so that if one piece of the puzzle fails, another one picks up.”

Reyes spoke at the April 11 IACC meeting and agreed that a wandering medical code could save lives. “Parents would immediately be educated on prevention as well as provided access to whatever tools and resources were necessary to prevent an incident of wandering from becoming a tragedy,” she told the IACC.

Medlam agrees that multiple strategies are critical. “We think integrating as many of these programs into each area is absolutely essential,” she said. “It can’t just be one thing, because one thing’s never going to work. It’s always going to be defeated.”

As part of Project Lifesaver, police officers meet with parents and children monthly to change batteries. Reyes says this personal contact is an advantage for families and police to get familiar with each other.

“All I can think of is that if that bracelet would have been on Mason he’d still be here,” Medlam said. “I don’t want any other parents to have to look back and say if I would have had that I would still be living a beautiful life.

“People realize that it could be you. It could be any of them losing their child. Because it only took 17 minutes for me to lose mine forever – 17 minutes. And I was just as vigilant as any of them,” said Medlam. “When I went to work I called every 30 minutes. I was very, very vigilant with him. So if I’m that vigilant and I can still lose my child, then what can happen to their child?”

He Saw Nothing Bad in the World

When asked about her best memories of Mason, Medlam, her voice choking with emotion, recalled, “There’s a show called ‘Yo Gabba Gabba.’ There’s a song they sing. It’s two twin girls and they play a patty-cake game. He would play by himself. He would do the whole patty-cake game. And at the end they hug each other and whirl around. He would wrap his arms around himself and turn in circles. And that’s my favorite memory. There are a million of them. He was just a joy from the second he got up to the second he went to bed. He laughed, he smiled, he played. He was sheer pleasure.”

Mason was just starting his life. “Mason loved school and was in special ed preschool for two years. He would bring me his book bag and shoes and try to get me to put them on him so he could go, no matter what day it was or what time,” Medlam said. “We were so excited about this year because he was going to learn to talk with a picture book. He died two weeks before kindergarten started.”

When asked what she wanted Mason’s legacy to be, Medlam said, “I want him to save all his brothers and sisters that have the same problems and issues that he had. He looked at the world as a beautiful place with absolutely no danger in it and that’s what took his life. I want the world to know Mason's name, his face and what we lost the day he died. I want the world to know how to keep these children safe. I want other children like my son to live long, beautiful lives. I don't want anyone else to lose a child like Mason. He was the best of what I was and his loss is enormous.”

When Mason was diagnosed with autism, Medlam said she thought it was the worst news possible. “And then I got to know Mason and there was never one second where I would have traded him for a different child without autism, never one second. Everything he lacked he made up for in some other way. The absolute beauty, you could just see it in his eyes. He saw nothing bad in the world. There was nothing bad in the world. And it’s just constant devastation. It’s a horrific thing to lose your child. It’s important that people know what he was and how beautiful he was. It’s been seven months and I cry every day for my son.”

Medlam said programs such as Take Me Home, Project Lifesaver, and the Mason Alert registry honor her son. “I think every child that is saved because this is in place is a piece of my son alive,” Medlam said. “When I look in their eyes I see the same thing I saw in my son’s eyes. The same inner sense of beauty and joy and mischief, I see it in their eyes and they’re very, very, very special children and they should be protected by everybody, and with everything we have to protect them.”

What Should Parents Do?

What steps should parents of children at risk for wandering take? Officer Laurie Reyes, who runs the Project Lifesaver program in Montgomery County, Maryland, suggests the following:

Install an alarm of some type in your residence so you know when your child has left the house.
Provide swimming lessons for your child.
Have an identification on your child, whether an ID card or the child’s contact information written somewhere on his or her clothes.
Inform neighbors that you have a child with autism who has a tendency to wander if you feel comfortable doing so.
Have a script ready in case you need to call 911 so you don’t forget any pertinent information when under stress such as “My child will wander toward water.”
Call 911 right away if your child goes missing. Do not hesitate.

Wandering Resources

Autism Society Take Me Home Program: www.autism-society.org (search for Take Me Home)
Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration: www.awaare.org
Lifeprotekt wandering prevention GPS devices: www.lifeprotekt.com