Showing posts with label autism wandering. Show all posts
Showing posts with label autism wandering. Show all posts
Friday, 10 June 2011
Saturday, 21 May 2011
Support The Mason Alert To Prevent Autism Wandering and Death
"Support The Mason Alert To Prevent Autism Wandering and Death
On July 27th, 2010 our darling five year old autistic son escaped through a partially opened bedroom window and ran across the street to the pond. My oldest child,who was watching him, called me at work when she couldn't find him. I immediately called 911, and made the twenty five minute drive home in about fifteen minutes. While on the phone with 911, I repeatedly asked the police to check the pond, but when I finally arrived home, no one was at the pond. I rushed over and found my beautiful boy floating face down in that awful water. Screaming, I dove in and pulled him out and began CPR. His little body was still pink, but his eyes were closed and his lips were blue. The paramedics arrived minutes later and took over the CPR. I was overwhelmed with anger and despair. I later learned that the police hadn't been to the neighbor's pond because it was overgrown with weeds and they couldn't find it.
The doctors managed to get Mason's heart to beat and for two days we fought to keep him with us. We said every prayer that we could say. We begged and pleaded with God and we refused to let doctors take him off life support, but even modern medicine can't change some things, because in the end, there was no way to keep his little heart beating. Mason died for the second time on July 29th at 7:29 am.
We live in a fairly large city, but the most amazing thing happened. People fell in love with our son. Strangers came to pray for him, people we had never met wept bitter tears when he left us, and all of us have vowed never to let my beautiful son be forgotten. This website is here to promote all of the good works we are going to do in his name. If his death manages to keep another little boy or girl alive, then, although it will never be payment enough, at least there will be some meaning to this senseless tragedy.
We are working to get an alert in place which will be known as the "Mason Alert". Unlike the Amber Alert, which only goes into affect when a child has been exploited (Kidnapped or taken), this alert would be geared toward autistic children and adults. When a normal child disappears, most of the time the reasons are benign. They went to one friends house instead of the one they were suppose to go to, they went to the park instead of going straight home, ect., ect.
When an autistic child wanders or disappears, the immediate response should be a heightened state of awareness, and an instant realization of the danger that child is most definitely in. Due to their condition, all autistic children to one degree or another lack the ability to recognize danger signals.
They will walk into a busy intersection, despite traffic. They will walk through an open front door, not knowing if a predator is on the other side. They will hide in tight, enclosed spaces, not realizing the danger of suffocation or heat stroke. They will walk down a mile of railroad tracks, not realizing the train they love so much can kill them, and they will wade into the middle of a muddy pond, never thinking that they can't breath the muddy water.
We are hoping that the "Mason Alert" will help to educate authorities and also provide them with EVERYTHING they need to help us when one of our children escape. Many people may say, "Escape? How can that happen if the child is really being supervised?"
Let me just say this. Since my son died, I have been contacted by hundreds of parents of Autistic children, and not one of them have asked me that question. Just because a child is autistic doesn't mean he or she isn't brilliant and creative in his or her own way, and the number one outlet seems to be figuring out every safety lock ever invented. You put one type of lock on your door, and within a couple weeks you are out buying something else because your baby figured out that he can un-slide that lock with a broom, or if you push both sides together you can get the knob to turn. A normal child learns limits as they grow. They learn that leaving the house without mom and dad could mean they might get hurt. Unfortunately, that is a very difficult lesson to teach an autistic child.
We want the Mason Alert to immediately provide authorities with the following:
A current picture of the child.
Child's address and Contact information.
Their facinations: i.e. railroads, small spaces, water
Locations of all nearby hazards such as tracks, pools, ponds, abandoned houses, busy intersections.
Notify if the child is verbal or nonverbal. This is very important, because when we search for someone, we tend to stand in one place and shout the person's name. A nonverbal child won't respond to this AT ALL. When I arrived home, the police were shouting Mason's name. I could have been standing right beside him, shouting his name and not gotten a response.
How the child reacts under stress. i.e. do they hide, do they run, do they fight, do they shut down and just stand still.
And finally, how to approach the child and who needs to approach the child. In some instances, authorities will just have to immediately react if the child is in immediate danger, but in other instances, it might be better to wait for a parent or caregiver, and taking this step might help eliminate danger.
Please sign the petition for the Mason Alert by clicking on the CLICK HERE for Mason Alert" tab and filling out the form. Your information will be kept confidential. I will however share any of the comments that help show the need for this alert. If you do not wish your comments to be seen by any one other than my family, please include that in your message"
'Eye on the Door': Life with Autism Wandering
By Elizabeth Landau | CNN
"(CNN) — Whether it’s to a swimming pool or a doughnut store, Michael Browne knows where he wants to go — and since he doesn’t have the words to say so, he’ll just dart off.
Michael, who’s about to turn 10, has a severe form of autism. People with the developmental disorder typically have difficulty communicating and socializing. But another sometimes dangerous aspect of autism has received less scientific attention and causes endless stress for parents: A tendency to run away from home or adult supervision.
“We constantly have our eye on the door and on Michael, and it’s a hard way to live,” said Melanie Browne of Katy, Texas. “I think that’s the hardest part of raising him, is just the wandering issue.”
Autism groups are calling for greater awareness and study of what they call “wandering” or “elopement” behavior, referring to this habit of fleeing a place at any moment. Neither of those words accurately describes the phenomenon, but there’s no better shorthand at the moment, says Dr. Paul Law, director of the Kennedy Krieger Institute’s Interactive Autism Network.
Wandering is probably the leading cause of death among children with autism, Law said. Only limited data are available, but drowning seems most common among these fatalities.
Promoting an understanding of wandering in autism is important for Browne, who has dealt with police, teachers and neighbors who seem to blame her for Michael’s behavior, as if bad parenting were the cause. And she feels misled by doctors who suggested that with enough early intervention, Michael’s autism symptoms would markedly improve. Despite specialized programs beginning at age 2, he still can’t have a conversation and has been prone to running off since age 4.
“They want you to dream big, especially when they’re young. But then, when you realize your child is severe, there has to be some support for that, and you have to come to terms with that,” she said. “You end up grieving more.”
Toward greater knowledge of wandering
The Interactive Autism Network is looking for families affected by autism to participate in a survey regarding wandering behavior, as a step toward better understanding it. What differentiates those children who run away from those who don’t? What triggers it? What helps stop it? These are all open questions.
Survey findings may affect the debate over a proposal to make wandering a specific diagnosis. It would give wandering that is related to autism and other developmental disorders a “diagnostic code,” a classification for clinical and insurance purposes. A Centers for Disease Control and Prevention committee talked about the issue in March.
Browne, other parents and groups like Autism Speaks and the National Autism Association are supporting this effort. Autism spectrum disorders affect 1 in 110 children in the U.S., according to the CDC, but it’s not known how common wandering is.
A specific diagnostic code would help clinicians as well as police understand what the behavior means, gauge how frequently it occurs and allow for broader insurance coverage for interventions, such as tracking devices, advocates say. A diagnostic code is already in place for wandering in the context of dementia.
But the Autistic Self Advocacy Network joined several other organizations in writing a letter to the CDC against the proposal, partly because of a concern that a diagnostic code could put restrictions on people with autism in educational settings and elsewhere, leading to further isolation. The diagnostic code could also be used in situations where a child is deliberately trying to escape abuse and has no other way to express discomfort, these groups argue.
… when you realize your child is severe, there has to be some support for that, and you have to come to terms with that. You end up grieving more.
–Melanie Browne, mother of child with autism
And among children, wandering behavior isn’t unique to autism. A variety of different developmental disorders, such as attention-deficit/hyperactivity disorder, can also lead to children running off at any given moment, said Dr. Max Wiznitzer, a pediatric neurologist at Rainbow Babies & Children’s Hospital in Cleveland.
Since there are so many associated conditions that begin in childhood, Wiznitzer does not find it appropriate to single out autistic wandering in the way that some groups are advocating. The CDC’s proposal is not limited to autism; even so, creating a new code isn’t sufficient for understanding what drives a particular person to bolt at any moment, Wiznitzer said.
For autism specifically, current codes and physician recommendations are sufficient for insurance coverage, he said. Wandering is a serious problem, but it should be studied more closely, he said.
“We need to investigate further and best determine how to best meet the needs of all children,” he said.
Others say that a code for wandering in autism is necessary because the behavior may have particularly harmful consequences with this condition. A child with autism walking around alone may not be able to communicate with anyone who wants to help, said Geraldine Dawson, chief science officer of Autism Speaks.
Protecting children with autism
In late March, a train struck and killed a 6-year-old boy with autism from Geelong, Australia, who had wandered from home, Australian media reported. In the U.S., at least eight children who have autism, ages 3 to 8, died after wandering in 2010, according to the National Autism Association. In February of this year, two children with autism drowned, the organization said.
Worst-case scenarios fuel the fears of parents like Browne every day. Michael has an obsession with water, as she wrote in her iReport in 2008, which means he might try to go swimming alone, or get caught in traffic along the way.
“You live in fear that he’s going to get out, and then when he does, the police are going to be upset with you, even though you know you’re a great parent,” she said. “You’re just hyper-aware.”
There are a variety of reasons why children with autism may wander off; a common underlying factor is impulsivity, Wiznitzer said. They may feel stress or sensory overload from a situation and want to leave it; or, they may be attracted to a certain place and try to go there. An underlying condition such as anxiety should be treated, including with medication if necessary, he said.
Parents should also do whatever they can to prevent their children from wandering off alone, he said. The Browne household has deadbolt locks and an alarm system that beeps when any door or window is opened, which has kept Michael in so far. (The last time he got out, only the door had an alarm, and he found a spare key.)
Other parents equip their wandering-prone children with removable GPS tracking devices, such as a bracelet or anklet, so they can be found more easily. Michael’s mother looked into that, too, but couldn’t find any with a range wide enough for her son’s unexpected travels. And as far as a name bracelet, she fears Michael would hurt himself trying to take one off.
Many times, as children get older, the wandering behavior improves, Wiznitzer said. But there’s a subset of people who do not get better, and no one knows why.
Browne wishes there were more support for children like Michael who have severe autism. Her insurance stops covering therapy for autism at age 6, and the emphasis in many autism initiatives is on higher-functioning kids.
“You feel very isolated, and you feel alone, and when you do get help, it comes by accident,” Browne said.
Browne recognizes that there are some children with even more severe autism, who have trouble with basic tasks. Michael is currently schooled in a self-contained classroom for children with autism because of the wandering behavior, and he takes medication. She’s thankful for where he is, and she hopes for future medications that can help him with talking and socializing, and discourage wandering.
“They are not defective. They just have a different type of brain,” she said of children with her son’s condition. “I wish that people would realize that kids with autism, no matter how severe, have value.”
Source: http://www.cnn.com/2011/HEALTH/04/11/autism.wandering.diagnosis/?hpt=C2
Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace."
http://www.theautismnews.com/2011/04/12/eye-on-the-door-life-with-autism-wandering/
Dangerous Wandering a Lesser Known Side of Autism
http://www.medicinenet.com/script/main/art.asp?articlekey=141192
"Though wandering is often associated withAlzheimer's, autism experts say a tendency to wander is an under-recognized, and harrowing, facet of the neurodevelopmental disorder.
Autistic children who've wandered off may not realize they're lost, so it never occurs to them to ask for help finding their way home, said Geraldine Dawson, chief science officer for Autism Speaks. Some may realize they're lost but won't -- or can't -- ask for help because of the speech and social difficulties that come with disorder. Others may even hide or run if approached by a police officer or someone else trying to help.
And while typical toddlers tend to grow out of wandering and learn that it's important to tell mom or dad where they're going, autistic children's wandering may persist into adulthood."
Half of All Children with Autism Wander into Danger.
http://www.psychologytoday.com/blog/brain-sense/201104/half-all-children-autism-wander-danger
"Effect of wandering on families:
• Wandering was ranked among the most stressful ASD behaviors by 58 percent of the parents who reported the behavior in their children.
• 62 percent of families of children who wander were prevented from attending/enjoying activities outside the home because of fear of wandering.
• 40 percent of parents had suffered sleep disruption due to fear of wandering.
• Children with ASD are eight times more likely to wander between the ages of 7 and 10 than their typically developing siblings.
Resources/support for families:
• Half of families with children who wander report they have never received advice or guidance about the behavior from a professional.
• Only 19 percent have received such support from a psychologist or mental health professional.
• Only 14 percent have received guidance from their pediatrician or other physician.
Motivations for wandering:
Despite speculation that summer is the peak season for wandering, 67 percent of parents of children who wander said they saw no seasonal pattern at all; only 25 percent felt summer was the peak season.
Parent believe that the top five reasons for wandering are
o Enjoys exploring (54 percent)
o Heads for a favorite place (36 percent)
o Escapes demands/anxieties (33 percent)
o Pursues special topic (31 percent)
o Escapes sensory discomfort (27 percent)
The study shows that wandering is a critical safety issue for children with ASD and their families. "We hope that advocates and policy makers use this research to implement key safety measures to support these families and keep these children safe," says Dr. Paul Law, Director of the IAN Project."
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