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kakteed's avatar

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Lori McIlwain, 39 of Cary, N.C., lives in constant fear that her 12-year-old son, Connor, who is autistic, will bolt from home or school if he is ever left unsupervised.

"You live in constant prevention mode," said McIlwain. "You're always on high alert."

Four years ago, Connor wandered away from a school playground and headed right toward a busy highway.

Nearly an hour later, a stranger led Connor to a school and police were called. Connor was unharmed, but for many children with autism who bolt, the outcome can be worse, even fatal.

Bolting from home is a familiar phenomenon for many families who have children with autism, but a new study now suggests these episodes happen more frequently than previously thought.

Nearly half the children who have an autism spectrum disorder (ASD) run away from home, and more than half of those who do go missing long enough to cause concern, according to a new study published Monday in the journal Pediatrics.

Families of more than 1,200 children with autism and more than 1,000 siblings without autism were surveyed online about their children's wandering habits.

Nearly half the families reported that their autistic child had attempted to escape or bolt from the home at least once after age 4, compared with only 13 percent of siblings without autism. More than a quarter of the children with autism who left their home were in danger of drowning and 65 percent were in danger of being injured by oncoming traffic, according to the study.

Anecdotal evidence suggests these episodes are all too common. On Oct. 3, a 12-year-old boy who wandered away from home in Houston died after being struck by a car while trying to cross the freeway.

"We tend to hear about the most traumatic stories on the news," said Dr. Paul Law, director of medical informatics at the Kennedy Krieger Institute in Baltimore, and study researcher. "It's just the tip of the iceberg of what parents are experiencing with this issue."

The more severe symptoms of autism, the more likely the child was to bolt, the study found.

Because the survey was administered through the Interactive Autism Network, a volunteer-based online community through Kennedy Krieger, the study may not provide a clear estimate on the wider number of autistic children who bolt and are at high risk of injury, according to the researchers.

"An unanswered question is whether the risk for elopement is higher in these children because of cognitive issues, their ASD or both," said Dr. Max Wiznitzer, a neurologist at Rainbow Babies & Children's Hospital in Cleveland.

Unlike wandering, which means to walk around aimlessly, in most cases individuals have with a clear goal in mind.

For Connor, his was a fascination with highway exit signs. Connor was looking for the right number combination of an exit, McIlwain said.

"That was the turning point for us," said McIlwain, who decided to find ways to keep Connor from leaving on impulse.

Children who bolt from home are often anxious, or they enjoy running and exploring, the study researchers wrote.

"Young children in general may have a poor sense of danger, and this is particularly true for young children with autism," said Lori Warner, director of the HOPE Center at Beaumont Children's Hospital in Royal Oak, Mich., who was not involved with the study.

"Many are simply going to whatever interests them or attempting to escape unpleasant circumstances, without understanding that they could be harmed or that they should stay with their families [or] teachers," she said.

Wandering added to the parents' already high stress levels and many parents felt little support to help them manage their children's impulsive behavior, the study found.

"Taking vacations or even simple outings to restaurants or stores are fraught with worry and stress for many of our families, and as a consequence some become socially isolated, further increasing their stress and decreasing their social support," said Warner.

Currently there are no national standards for responding to missing children with autism. The Amber Alert system, which focuses on child abduction, does not cover children with autism who wander.

"Once a child goes missing, there needs to be a way to initiate a search," said Law. "Each minute that goes by without that child being recovered, the chances of a serious outcome goes up tremendously."

McIlwain uses stories to teach Connor about staying safe. They have put stop sign photos on their door as a visual cue, and installed alarms on doors and window.

Many parents like McIlwain have also found success in GPS-like tracking devices worn on the wrist or ankle, originally used as a way to locate dementia patients who wander off. When activated by the caregiver, the device generates a 911 call so the individual can be located quickly.

"Still, no measures are 100 percent effective, and parents of children with ASD must be extremely vigilant, which is draining," said Warner.

Many medical centers offer training for parents and their autistic children on preventing elopement. Children are taught signals to stop, go and stay, while parents are taught what to do if a child wanders.

Even parents who are not worried their child will take off should still learn ways to prevent and prepare, many experts said.

"Future research should focus on 'best practices' to prevent elopement, and the public also needs to become aware that children with ASD do elope, and it is not due to bad parenting," said Pauline Filipek, professor of pediatrics in the division of child and adolescent neurology at University of Texas Health.


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xdivision_whitey's avatar

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Um... and how many were actually case of actually neglect when doing this study? Seriously I will continue to believe most kids under lables of ASD are kids actually suffering from RAD, Neglect, other issues. My family had two little 4 year old run aways. One was actual neglect and the other not.
jellykans's avatar

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kakteed
Quote:
Lori McIlwain, 39 of Cary, N.C., lives in constant fear that her 12-year-old son, Connor, who is autistic, will bolt from home or school if he is ever left unsupervised...

Bolting from home is a familiar phenomenon for many families who have children with autism,
but a new study now suggests these episodes happen more frequently than previously thought.

Nearly half the children who have an autism spectrum disorder (ASD) run away from home, and more than half of those who do go missing long enough to cause concern, according to a new study published Monday in the journal Pediatrics.

Families of more than 1,200 children with autism and more than 1,000 siblings without autism were surveyed online about their children's wandering habits.

Nearly half the families reported that their autistic child had attempted to escape or bolt from the home at least once after age 4, compared with only 13 percent of siblings without autism...

The more severe symptoms of autism, the more likely the child was to bolt, the study found....

Currently there are no national standards for responding to missing children with autism. The Amber Alert system, which focuses on child abduction, does not cover children with autism who wander.

"Once a child goes missing, there needs to be a way to initiate a search," said Law. "Each minute that goes by without that child being recovered, the chances of a serious outcome goes up tremendously...."



Source


I think it is important to note that this was a small study, and if half wandered, then half did not (although those who wander was 5 times the number of children who do in general).

Oops - meant to preview, still in draft -

I think it's important to understand that the amber alert system does not apply.

I babysat a 5 year old wth sever autism when I went back to school. I don't think I could have managed him outdoors. As it was, I learned that on every visit it worked for me to let him run in a circle through the house (livingroom to bedroom to bathroom to bedroom to livingroom, no hall) for a good 5 minutes, in order to get any responsiveness from him at all. He was a good kid, just had no 'off' switch, no impulse-/self-control.

The next year, he was a totally different person, the first I saw improved with use of medications. While it still doesn't work for everyone, it made a dramatic change for him. He had wonderful parents who, even so, had decided not to have a second child after all, in order to be able to help him. They just didn't have the resources otherwise.

Since ASD was added to U.S. law as a qualifier for special ed, many, many more children are receiving the label. Not everyone makes that connection. While numbers have increased, the spike was caused by a change in law rather than cause.
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xdivision_whitey
Um... and how many were actually case of actually neglect when doing this study? Seriously I will continue to believe most kids under lables of ASD are kids actually suffering from RAD, Neglect, other issues. My family had two little 4 year old run aways. One was actual neglect and the other not.


What is RAD?
I assume the D is disorder but am not finding a ready definition in the context you probably meant it. (I'm guessing you did not mean the unit of radiation or the software development acronym.)

I don't understand why you seem biased towards assuming these wander offs are due to neglect.
Children with autism or aspergers (two disorders on the same spectrum) are prone to doing things that seem illogical to 'normal' thinking people. I've had greater experience with aspergers than autism some of the stuff I've seen them do makes me want to face palm. I had to work at getting my head around their brains thinking differently and not trying to assign my logic to things. One of my cousins who is aspergers has wandered off and caused concern.

You could label it 'neglect' in the sense that if you decide these kids need constant supervision and they wandered off then someone was neglecting to supervise them for a time. But I suspect that is not what you meant by neglect.
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David2074
xdivision_whitey
Um... and how many were actually case of actually neglect when doing this study? Seriously I will continue to believe most kids under lables of ASD are kids actually suffering from RAD, Neglect, other issues. My family had two little 4 year old run aways. One was actual neglect and the other not.


What is RAD?
I assume the D is disorder but am not finding a ready definition in the context you probably meant it. (I'm guessing you did not mean the unit of radiation or the software development acronym.)

I don't understand why you seem biased towards assuming these wander offs are due to neglect.
Children with autism or aspergers (two disorders on the same spectrum) are prone to doing things that seem illogical to 'normal' thinking people. I've had greater experience with aspergers than autism some of the stuff I've seen them do makes me want to face palm. I had to work at getting my head around their brains thinking differently and not trying to assign my logic to things. One of my cousins who is aspergers has wandered off and caused concern.

You could label it 'neglect' in the sense that if you decide these kids need constant supervision and they wandered off then someone was neglecting to supervise them for a time. But I suspect that is not what you meant by neglect.



RAD is Reactive attachment disorder. RAD come up when normal attachments to primary caregivers, parent or legal gaurdian, in early childhood aren't made. Kids can develope this when they are abused, neglected or suffer from sepration anxeity.
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xdivision_whitey
David2074
xdivision_whitey
Um... and how many were actually case of actually neglect when doing this study? Seriously I will continue to believe most kids under lables of ASD are kids actually suffering from RAD, Neglect, other issues. My family had two little 4 year old run aways. One was actual neglect and the other not.


What is RAD?
I assume the D is disorder but am not finding a ready definition in the context you probably meant it. (I'm guessing you did not mean the unit of radiation or the software development acronym.)

I don't understand why you seem biased towards assuming these wander offs are due to neglect.
Children with autism or aspergers (two disorders on the same spectrum) are prone to doing things that seem illogical to 'normal' thinking people. I've had greater experience with aspergers than autism some of the stuff I've seen them do makes me want to face palm. I had to work at getting my head around their brains thinking differently and not trying to assign my logic to things. One of my cousins who is aspergers has wandered off and caused concern.

You could label it 'neglect' in the sense that if you decide these kids need constant supervision and they wandered off then someone was neglecting to supervise them for a time. But I suspect that is not what you meant by neglect.



RAD is Reactive attachment disorder. RAD come up when normal attachments to primary caregivers, parent or legal gaurdian, in early childhood aren't made. Kids can develope this when they are abused, neglected or suffer from sepration anxeity.


Thanks. I should have guessed what the A was. I am familiar with attachment disorder but didn't realize 'reactive' was in front of it. I guess I've always heard it abbreviated a bit. RAD is in my DSM but not AD so I gather reactive is just part of the name as opposed to it being two different types of AD.

RAD diagnosis takes fairly sever neglect. DSM says ... diagnosis ... can only be made in the presence of clear evidence of grossly pathogenic care... requires a home visit or close observation..(of how the child reacts to the caregiver in a variety of situations - feeding and non-feeding times etc.)
In other words, from what I gather the neglect has to be fairly substantial as opposed to a new mom maybe not doing the best job she could be doing.

Although I know that happens in the US I don't think it is widespread enough to taint this survey.
Also, the DSM specifically excludes a diagnosis of RAD in the presence of mental retardation or the presence of a pervasive development disorder such as Autism. So in other words if these kids were (correctly) diagnosed as Autistic then by definition they are not RAD, at least according to the DSM. Mind you, I don't personally think there can't be some overlap. Autistic or mentally retarded children can be very difficult to raise which, for some parents, can invite neglect and it's hard not to think that would make their situation worse.

BTW, in another post I mentioned my cousin (technically more of a foster cousin I guess) who had walked home from school in the middle of the day. I sent this article to my friend who works with autistic / dyslexic - who also happens to be that kid's grandmother. She emailed back that it reminds her of 'M' and that she can think of at least five different occasions he wandered off and had everyone worried. He's 18 now and though better he is still way behind his years in wisdom or what you might call 'common sense' and is a worry. Bright kid though. Sometimes he comes up with profound things that leave adults moved and other times he makes you facepalm. It is sometimes hard to believe different things he does or says come from the same kid. He is very kind hearted though. He knew I was collecting those collector spoons (used to for my mom). He bought a couple for me at a garage sale but shortly after they moved farther away. He carried them around in his coat pocket for two years waiting to see me so he could give them to me. It came up one time when his grandmother was doing some laundry during a visit and noticed them and asked him why he always had those spoons in his coat pockets. After that we made it a point for me to see him next time he was in town.

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