Half of All Children With Autism Wander and Bolt from Safe Places, Study Shows

Halo

The Autism News - Parent Of Autistic Child Shares Fears After Cushing Boy’s Death

http://www.theautismnews.com/2011/04/21/parent-of-autistic-child-shares-fears-after-cushing-boys-death/

Halo

Halo

panorama - abuse on vulnerable adults

panorama - abuse on vulnerable adults

Following BBC One Panorama investigation into the shocking abuse of vulnerable adults in care, I have just signed the National Autistic Society's petition to make sure that the Government takes urgent action to prevent this happening again.

Please click on the link below to help prevent the fight against abuse of vulnerable adults.

Thank you.

http://e-activist.com/ea-campaign/clientcampaign.do?ea.client.id=10&ea.campaign.id=10762

Halo

Had meeting with school regarding Lou wandering from premises.

Just had a meeting at the school, well a quick discussion.

I saw the place where she got out. She climbed under a fence while the person looking out for her went to take another pupil to the loo. It's about 20 yards from the main road and she was gone 5-10 mins. The people from the local nursery did find her (thank god!). The nursery is next to the school but still in front of the main road.

If she had got onto the main road and avoided being hit by a car then she would have been in an area of lots of roads. She is big enough for people to have thought she was not far from her parents etc. She could have wandered for miles without anyone taking an interest.

The head of the ASD says NO to funding for a 1:1! and they are going to keep her in the school at break times.

I'm now going to make some phone calls to see what my rights are. - Made some phone calls and have been told i need to push for 1:1 for at least break times etc. as keeping her in or restricted is not suitable. As its not written on her statement that she needs 1:1 then i will be writing a letter requesting an early annual review.

I also phoned the local nursery and was told the school didn't even know she was gone! and that it was a parent of a child at the nursery that spotted her and took her to the nursery

Halo

Joint Letter to CDC on Wandering

Click link to Leftbrainrightbrain Blog for more info:

http://leftbrainrightbrain.co.uk/2011/04/joint-letter-to-cdc-on-wandering/

After a nine year-old autistic boy escapes from the school playground, the author asks how this could happen.

"After a nine year-old autistic boy escapes from the school playground, the author asks how this could happen.

By: Emma Stockwell - Saturday 21 May 2011
Tags: safety, escape, special needs, Autism, School, teachers

Last week a nine year-old boy escaped from the same school my son attends. They are both in a small class unit for children with moderate learning difficulties which is attached to the mainstream community school. The class has a maximum of ten children in any given school year, and the ratio of teachers and assistants to pupils is 1:2. What I, and the parents of this vulnerable little boy, want to know is, how did this happen? How did a nine year-old boy with autism manage to leave the confines of the school premises un-noticed during his lunch-time period?

For the purposes of this story and to protect the young boy and his family’s identity I shall name the boy Jake. Jake was on the playground and got in to a fight with another boy and hit him. Just for the record, I must point out that although a difficult age generally, the autism does affect the responses a child has to any given situation and Jake, as well as the other children in the unit, are subject at times to very cruel taunting for being “different”. With fear of the consequences Jake ran off, escaped and disappeared for two hours.

A frantic search of the school premises ensued after it became apparent that Jake was missing. I, and his mother, do not know how long it was before the school became aware that Jake was missing. However, I am sure those questions will be asked. When it was obvious Jake was not on the school premises, Jake’s mother was informed and she immediately alerted the police. A search began in the vicinity of the school. Thankfully, after two hours the police found Jake three miles away in a small village and, luckily, none the worse for wear. Two hours of desperate worry and a terrible ordeal for Jake’s mother. We parents all know the dangers every child faces in today’s world; what was going through Jake’s mother’s mind is something every mother can relate to. My heart goes out to her.

Jake has a “statement of special needs”, as do all the children in the unit. This is to assess their learning difficulties, and basically it is a means of applying to the county council for the funding they need to educate and care for them within a safe and happy environment. Jake’s mother and the personal statement for Jake would have outlined that Jake has a history of being a runner after confrontation. It is the duty of the council to ensure every child’s needs are fully met within the unit. In the school Jake and my son attend they do get integrated with the mainstream children at play and lunchtimes. There are dinner ladies, teachers and other pupils. So how on Earth did a nine year-old boy slip out un-noticed from such a large and busy school? Surely the children from the unit have extra supervision, and with Jake’s history more supervision at play and lunchtimes would have been in place? At present, Jake’s parents are still waiting for those answers.

Frighteningly, Jake’s mum is not alone. In November 2010 a five year-old girl escaped through a fire door, unlocked a gate and was found 40 minutes later next to a busy road. In September 2009 Harrison Sperring went missing from a school in Portsmouth, later to be found by police, safe and well. There are many other horrifying and alarming cases of children escaping and going missing while at school. Where were the teachers and other staff? Where were the dinner ladies? And in Jake’s case, why was a child with autism and a tendency to escape after confrontation left unsupervised in a playground? How did he escape? All children are vulnerable, not just those with special needs. As a parent of an autistic child myself I cannot contemplate that my child may just be left alone at the mercy of other children and their cruel taunting, but also with a strong possibility that he may be able to escape, if he so wished.

All these cases pose another serious question for the safety and supervision of all our vulnerable children while they are in school. If a child can get out easily and un-noticed then who can get in? A sobering thought indeed."

An amazing article by Emma Stockwell!

Support The Mason Alert To Prevent Autism Wandering and Death

"Support The Mason Alert To Prevent Autism Wandering and Death

Sheila and Kenneth Medlam are the parents of Mason, the five year old who left his home, within minutes found a pond and drowned. They are rallying for a "Mason Alert" and ask you to sign the petition: HERE. From the family's website: Mason Allen Medlam.

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/

Plan Your Response to an Autism Emergency

http://www.pathfindersforautism.org/articleItem.aspx?id=71

Autism insights on wandering by Samantha Driscole

Autism insights on Wandering

by Samantha Driscole

92 percent of children and adults with autism wander and this can be both dangerous and deadly. This is largely due to the fact that individuals on the spectrum often have an impaired sense of danger. Many individuals on the spectrum maybe drawn to large bodies of water and will play in and may attempt to swim. They don’t take into account current, under toe or sudden drop off or if they can swim. The number one cause of death in autistic adults and children who wander is drowning. This I have written from my observations and from talking with my autistic cousin. When it comes to wandering from my experience there seems to be 6 forms of wandering.

• Target wandering
• Pleasure wandering
• Distracted/dissonant wandering
• Triggered/interest wandering
• Exploration wandering
• Bolt wandering

Target wandering: target wander is when the individual has a specific destination in mind, this is usually a place they enjoy and have been to before. This may be done to seek comfort or just to have fun. This is a very common form of wandering my result from any of the other forms of wandering.

Pleasure wandering: This often turns into distracted or target wandering, pleasure wandering is when the adult or child is very happy and relaxed and just wants to go for a walk or go to a place they love. Pleasure wandering can also occur when the child or individual gets into trouble at home is is stressed about something and they go outside and feeling more relaxed are overcome with a desire to walk or go somewhere.

Distracted/dissonant wandering: This is fairy common and tends to occur when the adult or child is out playing, on a walk, like going for a walk to a park or home from the bus stop, or when they are out running errands. The adult or child gets so lost in thought and wrapped up in their own world they keep walking not realizing they over shot their destination or completely for getting what they were doing and where they were going. This can lead to any of the other 3 forms of wander.

Triggered/ interest wandering: Triggered/ interest wandering is when something caught the individual’s attention that causes them to wander. One example of this would be if the child or adult saw something they were interested in or wanted then they would wander off and would go to where it is. Another example would be if they were to see a cat and wanting to pet it or hold it they would slip away and fallow the cat.

Exploration wandering: This occurs most often when the adult or child is in a new environment and it is basicly self explanatory. The adult or child goes and explores their new surrounding, if they have just moved they will likely explore all the rooms then the yard and from there on out.

Bolt wandering: Bolt Wandering I also refer to as panic wandering. This is often seen when something frightens the individual such as a sudden loud un expected sound. This sound seems to trigger the flight or fight response to kick in causing the individual to bolt in this instance the individual is fully paniced and will try to find a place to hide. When this happens the child or adult may seek small dark places where they can hide. This can be very dangerous as some small cramped space will have a limited amount of oxygen and during the summer dehydration and hyperthermia, or heat stroke are slo major risks to the individuals safety. Some places an individual may choose to hide my be overtly dangerous one example would be a train tunnel. You and I can see how CLERLY dangerous this would be but for and adult or child on the spectrum, especially when frightened, they will note register the inherent danger but will instead will see this as a “safe place,” other dangerous hiding places may be in or under cars or truck

“My child is only mildly autistic and he/ she knows bodies f water are dangerous so why would he/ she go near them?”

This is often a baffling question however the answer is very simple, it is one thing to be able to say “ it isn’t safe to play in a river,” but it is a totally different thing when the concept need to be put into play. My cousin has high functioning autism and she described it to me like this.

“when I am talking to people I can tell them what is and is not safe but when I wander off on my own I am often in my own world and just enjoying life, and whn I come across a river or pond my brain doesn’t register it as a safety hazard but rather a a beautiful shimmering river of water. I love water and I love playing in it so when I see the shimmering water I am over come with a desire to play with or swim in it. I can tell you what is dangerous in a list but when I am off wandering and in my own world danger and safety never register as though the information vanishes from my knowledge and understanding for the time and all I know is joy and pleasure,”

“Why don’t you spank them? If you spank or punish them they won’t wander,”

Spanking won’t work many parents if not all have tried once or twice! The reality is when and adult or child wanders they often don’t realize they are doing anything inherently wrong or dangerous and they won’t make the connection between the action and the punishment

Many individual on the spectrum have trouble realizing others have thoughts, opinion or beliefs other than their own. When wandering many adults and children don’t make the connection and are not worried because they know exactly where they are and therefore so does everyone else

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."