Mason Alert would help prevent wandering, drowning deaths of kids with autism

Wandering and drowning are leading causes of death for children with autism, who often have limited communication abilities, impulsive behaviors, and a lack of a sense of danger.

The mother of a boy with autism who died last summer after wandering and drowning in a pond told the federal Interagency Autism Coordinating Committee (IACC) Friday that action needs to be taken immediately to prevent similar tragedies from occurring.

At the IACC meeting in Bethesda, Maryland, Sheila Medlam of Colwich, Kansas advocated for a “Mason Alert” for children and adults with autism and other disabilities who wander. Medlam’s 5-year old son Mason died after drowning in a pond July 27. 

Two representatives of the National Autism Association (NAA), Lori McIlwain and Wendy Fournier, also spoke to the group about the need for a registry and alert system for children and adults with cognitive impairments.  They called for federal funding to combat wandering, including better training for law enforcement authorities, tracking systems, and more research and data on wandering. 

According to the NAA, 92 percent of parents surveyed said their autistic children 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.  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 Allen Medlam

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

On July 27, Medlam went to work.  Her adult daughter was watching Mason.  Medlam and her husband Kenneth were 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 Medlam had bought some fans.  Apparently Mason got past one of the fans on the window sill 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.

She 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.”  


Unless you have a special needs child that wanders, I think it is hard for anyone to grasp the relationship that develops  between parent and child.  Mason was the center of my world.  I revolved around his needs and wants.  Our household was one big dance all designed to keep him safe.  He literally was my joy.  He was in my arms or by my side every second that I was home.” 

Medlam asked the committee, which advises the Secretary of Health and Human Services, “Why did my son have to die?  Waiting one day is too long.  You have to do something now.  Politics shouldn’t be involved.  These children, they are gone forever.  You don’t have time to wait.  You need to do something now.” 

Mason Alert

When asked what she wanted Mason’s legacy to be, Medlam told Examiner.com, “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.

“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.”

Medlam is advocating for a law that would establish a Mason Alert similar to the AMBER Alert and Silver Alert systems. The Mason Alert would be issued for people with cognitive disabilities who are prone to wandering and do not recognize danger.

The AMBER Alert system only includes children who have been abducted, while the Silver Alert system usually only covers people over 65 who have Alzheimer’s disease or dementia. 

The Medlams have set up the Mason Allen Medlam Foundation for Autism Safety, which has an online petition to put in place a national Mason Alert program.

A Mason Alert would provide authorities with contact information and a photo of the missing persons; their fascinations, locations of nearby hazards such as pools and ponds; how they react under stress; their communication abilities; and how to approach them.

“My sister’s son is severely autistic and he’s attracted to railroad tracks,” Medlam told Examiner.com.  “He escaped out of their house one night through a window and wandered five miles down the railroad track. If a train would have come he would not have moved out of the way.  They each have their own fascinations.  Unfortunately for most of them it’s water.  It would also provide a list of their skills – are they non-verbal or are they verbal.” 

Mason was non-verbal.  “I never heard him say ‘Mom.’  He had absolutely no verbal skills,” Medlam said.  “When I arrived they were yelling Mason’s name and to him that would have been a game.”

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.  

“There is no teaching of first responders how to react when an autistic child wanders. There was no sense of urgency when Mason disappeared.  They were looking in the wrong places.  They looked the wrong way.  They didn’t think he could get that far.  But I knew as an autistic child the second he got out of the house, he was only focused on one thing.  And it didn’t matter what was in his way.  But they didn’t do things the right way.  But I’ve seen every one of their faces.  I don’t blame any of them, they just didn’t know and they were heartbroken.

“Emotionally and physically, it was five years of constant fears that I would wake up and he would be gone.  And then one day I did,” Medlam told Examiner.com.  She said her son had no fear of danger.

“I’m sure he went the whole way to the pond, just giggled and laughed because he thought it was so much fun.  He managed to get past us and he knew where he was going.  And he looked at the pond.  And he saw a magnificent, beautiful boy and he didn’t see a place where he could get hurt or die.

“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.”

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.  Driving around in his little Crazy Coupe and every time he would pass by the window he would wave at himself.  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.”

National Autism Association and Wandering

McIlwain, the board chair of the NAA, has a son with autism who wanders and is attracted to highway signs and water. McIlwain told the committee that her son has had eight wandering incidents in three schools. She called for medical coding for wandering so health and educational professionals can be aware of the issue.

Fournier, the president of the NAA, has a daughter with autism who also has a tendency to wander. She said federal laws should require schools to implement response protocols for wandering.  

She told the IACC that first responders and physicians need to be aware of the propensity of people with autism to wander.  She also called for the use of federal oversight for tracking technology, the cost of which is minimal compared with large-scale searches.

Fournier recommended that the IACC add a new objective to its Strategic Plan related to wandering prevention.  At the end of the meeting the IACC voted to create a subcommittee to address autism wandering and other safety issues.    

Resources for Wandering

The NAA and advocacy organization Unlocking Autism have teamed to provide guidance in the form of a Safety Toolkit and an Autism & Wandering Prevention Brochure. 

Some of the recommendations include: developing an informational handout about children at risk, teaching kids to swim, using ID bracelets or personal tracking devices, and securing homes.  

The Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration is a working group of six national non-profit autism organizations, including the NAA and Autism Speaks.  AWAARE’s mission is to reduce autism-related wandering incidents and deaths.

Tracking programs such as Project Lifesaver are designed to locate missing people with disabilities.  Project Lifesaver provides people at risk for wandering with transmitters worn on the wrist that provide their locations.  However, no federal funding is available for Project Lifesaver programs for people with autism, although there is federal money allotted for Project Lifesaver for people with Alzheimer’s disease.

Lifeprotekt offers wandering prevention and personal GPS location devices for people with autism and other disabilities. 

AWAARE describes tracking technologies on its website. 

Take Me Home is a Pensacola, Florida Police Department program 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. The program is available to other police departments and was developed as part of the Autism Society’s Safe and Sound Campaign.  

The Law Enforcement Awareness Network (LEAN On Us) provides first responders with information and resources that will allow them to better serve people with autism, other disabilities, and mental illness.

Safetynetsource is an information hub for caregivers of people at risk for wandering.

Other Deaths of Children with Autism from Wandering

Below are links to six cases of autism drownings that occurred as a result of wandering just in the last five months.  The cases are strikingly similar.   

• October 7, Salmon, Idaho: 7-year old boy with autism drowns in river after wandering
  
• September 14,  Barling Creek, Arkansas: 3-year old girl with autism drowns in creek after wandering
  
• Aug 19, Tuscon, Arizona: 5-year old boy with autism drowns in golf course pond after wandering
  
• August 3, Austintown, Ohio: 7-year old boy with autism drowns at school pool after wandering
  
• June 27, Bernards, New Jersey: 8-year old boy with autism drowns in pond after wandering
  
• June 23, LaCrosse, Wisconsin: 7-year old girl with autism drowns in pool after wandering

Click here for an article listing earlier deaths of children with autism due to of wandering. 

"He saw nothing bad in the world."

When Mason was first diagnosed with autism, Medlam said she was scared.  “I thought, 'How am I ever going to live with an autistic child?' I couldn’t understand,” she told Examiner.com.

“I thought it was the worst news in the world.  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.” 

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