Children with autism can be prone to wandering, fascinated by water or other hazards, and unaware of danger. Many of these children are also impulsive and nonverbal. This combination of characteristics can be fatal, and it was for 5-year old Mason Medlam, who drowned in a pond near his house in Colwich, Kansas July 27.
Wandering is a leading cause of death among people with autism, and many fatalities occur because of a fascination with water. “I am tired of reading my son’s story over and over again, this happening to other families,” said Sheila Medlam, the mother of Mason. “It makes me sick. It makes me relive that day. I don’t want to have to do that.”
Mason’s family has proposed the Mason Alert, a national registry of people with autism and other disabilities that would help authorities find them if they go missing.
Plans are underway for the Mason Alert questions to be integrated with an existing police program for autism wandering safety, the Take Me Home program, which contains photos and contact information for approximately 500 children and adults with autism and other disabilities in Pensacola, Florida. Approximately 250 police departments across the U.S., Canada, and England are using the Take Me Home program, which is free to any police departments that want to use it.
The information in the Mason Alert includes not only photos of children and adults with autism along with contact information, but it also lists their fascinations and interests, whether they are verbal or nonverbal, if they have any serious health concerns such as seizures, how they react under stress, how to approach them, and other information specific to the person.
The Medlam family 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,” said Medlam. “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.”
The Medlam family created the Mason Allen Medlam Foundation for Autism Safety, which includes an online petition to put in place a national Mason Alert program. Last month, Sheila Medlam spoke about the crisis of autism wandering at the Interagency Autism Coordinating Committee at the National Institutes of Health in Bethesda, Maryland. Medlam recently met with the Pensacola Police Department to expand the Take Me Home program to include the questions from the Mason Alert.
“There’s nothing standardized across the board that is in every city and state to keep our children safe. Everybody is trying to create their own little thing and it’s not working,” said Medlam. “It has to be in place everywhere or another system that matches these standards has to be in place across the nation in every single city, period and we won’t settle for anything less.”
Officer Jimmy Donohoe of the Pensacola Police Department said Medlam has helped bring the issue of autism wandering to the forefront. “With Sheila’s passion, it’s bringing a lot of this to the surface because we do lose a lot of autistic children in the United States to drowning,” Donohoe said.
The original program was created when Donohoe attended an Autism Society of America meeting for the Florida panhandle on wandering safety in 2003. He realized that the parents were frustrated and scared and didn’t know what steps to take to protect their children should they manage to wander, despite door locks, alarms and constant vigilance. He also realized that the issue was much larger than a few children and adults.
Donohoe, who has a son with autism, suggested bracelets, necklaces, and tennis shoes with names and addresses at the meeting 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.”
“I absolutely encourage any department to take in some type of training from the autism community,” Donohoe said. He told the story of a 9-year old boy who was running down a street with no clothes in Pensacola. Because the officer who saw the boy had autism training, he was able to handle the situation, looked him up in the Take Me Home program, and brought him home.
The Pensacola Police Department has returned children or adults with autism or other disabilities home at least nine times through the program, which is part of the Autism Society’s Safe and Sound Campaign. Consolidated Technology Solutions of America developed the software that integrates with 911 systems and is working to add the Mason Alert questions to the program.
If a child is non-verbal and an officer finds him or her, the officer is able to enter a description of the child, photos will come up in the system in a police car or at a police station, and then 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.’” Key information about Mason could have saved his life.
Medlam said her son would be alive today if authorities searching for Mason had information about Mason’s attraction to water.
Medlam was frantic when she made her 911 call after she found out Mason was missing. “I was terrified. I told them to go to the pond. I never mentioned there’s a large windmill near the pond,” she said. “If I had said go to the pond with the large windmill there would have been every single police officer and firefighter there. He was only drowned for five minutes by the time I pulled him out of the water. They would have gone straight there and Mason would still be alive because they had been there for 17 minutes.”
In addition to the integration of the Mason Alert fields, another possible upgrade being looked at would be a secure web-based system that would allow parents to enter information from home.
Currently, parents and caretakers must go to a police station to have a photo taken of their children and have information entered into a database, or information is added at police outreach events.
Facial recognition software will also be examined as a potential addition to the program. The software would enable a responder to take a photo of a wandering person who is unable to communicate, and match it up with a profile in a database to help determine the identity of the person.
The Mason family also hopes to establish an alert similar to the national AMBER Alert system for missing children, or to include criteria for autism wandering into the AMBER Alert, which currently only covers abducted children.
But for now, Medlam hopes that lives will be saved because of the story of her son, the awareness that has been raised about autism wandering, and the expansion of the Take Me Home program to include the questions in the Mason Alert.
“He’s a hero in my mind. It has been 105 days and look what has been done in Mason’s name,” Medlam said last week. “That’s all I can ask. We’re very proud of Mason and we give him all the credit. Everybody looks at his face and they can see their own child in his face whether or not they have an autistic child, a child with Down syndrome, or just a normal little boy or girl, they can look in his face and think how awful it would be to lose their child.
“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. I had four locks on all of my doors. In five years I never slept more than a foot from Mason. 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?”
Now that the Take Me Home program is expected to incorporate the Mason Alert questions into the system, Medlam says the next step is to spread the word. She is contacting governors and other legislators to try to get police departments in their areas to adopt the program.
The memory of finding Mason floating in the pond is still fresh for Medlam, who said the memory of her son is kept alive in other children with autism.
“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.”
For more information about the Take Me Home Program, contact Officer Jimmy Donohoe at (850) 436-5416 or email the Autism Society at email@example.com. Information about the Mason Alert is available at www.masonalert.com.
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