Occurrence and Family Impact of Elopement in Children With Autism Spectrum Disorders

9 Oct

In the past few years there has been a great deal of discussion on wandering and autism. Wandering as in elopement, running away, leaving a home or group. With people who are not independent this can obviously be a dangerous situation.

The U.S. Interagency Autism Coordinating Committee (IACC) had much discussion on wandering. The previous IACC had a Subcommittee on Safety and provided HHS Secretary Sebelius with a letter on the subject. One hot topic was whether a medical code should be created to track wandering as there was little hard data on the topic.

One result of this discussion was a study to answer: how prevalent is wandering? Anecdotally we knew the answer was going to be that there is a high prevalence. Now there are numbers to back that up from a study published in the journal Pediatrics.

Here is the abstract:

OBJECTIVES: Anecdotal reports suggest that elopement behavior in children with autism spectrum disorders (ASDs) increases risk of injury or death and places a major burden on families. This study assessed parent-reported elopement occurrence and associated factors among children with ASDs.

METHODS: Information on elopement frequency, associated characteristics, and consequences was collected via an online questionnaire. The study sample included 1218 children with ASD and 1076 of their siblings without ASD. The association among family sociodemographic and child clinical characteristics and time to first elopement was estimated by using a Cox proportional hazards model.

RESULTS: Forty-nine percent (n = 598) of survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years; 26% (n = 316) were missing long enough to cause concern. Of those who went missing, 24% were in danger of drowning and 65% were in danger of traffic injury. Elopement risk was associated with autism severity, increasing, on average, 9% for every 10-point increase in Social Responsiveness Scale T score (relative risk 1.09, 95% confidence interval: 1.02, 1.16). Unaffected siblings had significantly lower rates of elopement across all ages compared with children with ASD.

CONCLUSIONS: Nearly half of children with ASD were reported to engage in elopement behavior, with a substantial number at risk for bodily harm. These results highlight the urgent need to develop interventions to reduce the risk of elopement, to support families coping with this issue, and to train child care professionals, educators, and first responders who are often involved when elopements occur.

Usually with papers like this I try to obtain a copy in advance to review when it is released. last week and this week are too busy for that. The Autism Science Foundation blog has a discussion of the paper in New Study Confirms Autistic Wandering is Widespread. Autism Science Foundation president Alison Singer was one of the forces behind getting this study accomplished, along with Lyn Redwood of SafeMinds and there was support from the National Autism Association and Autism Speaks.

Often on such high profile papers, the full paper is made available to the public. Apparently not in this case.


By Matt Carey

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21 Responses to “Occurrence and Family Impact of Elopement in Children With Autism Spectrum Disorders”

  1. Lara Lohne October 9, 2012 at 10:04 #

    I took part in this survey about a year and a half to two years ago or so. Not too long after my son was first diagnosed. He is better able to communicate now, but when he wants something he wants it now and has very little tolerance for waiting while I finish sending an email to his case manager or complete a phone call or dishes and sometimes, if I am too distracted, he will try to sneak off. Fortunately our front door is pretty noisy when it’s opened so I am usually able to catch him. He tries to be sneaky though, which is funny and cute on one hand, but still scary and worrisome on the other one.

    He has always loved to run, and unfortunately due to knee injuries, I can’t keep up with him. When we are out and away from the apartments, I have to keep a little backpack with a leash on him and keep that in hand at all times, or he will run. He is beginning to understand traffic is dangerous and doesn’t try to run into the street after the spinning tires anymore, but if I let go of that leash (as I did once to retie my shoe) he will run. He’s quick and quiet and I didn’t even know he was gone until I looked up and he was about 200 yards down the road. If I run after him, he thinks it’s a game and will run all the faster, and that is when it gets scary for me because he is looking behind him rather then ahead.

    He did sneak out of the house one time this summer to go play with the little boy who lives down stairs. I was in the shower and my daughter was watching him. They were playing a tickling game. She took a short break to use the bathroom and came out and he was gone. She was able to track him down pretty quickly and stayed with him until I came looking for them. I’m not sure how to help him understand why he shouldn’t do these things, and I would really hate for him to ‘learn the hard way’ as that could result in serious injury or death. It is a worry, that’s for sure. His diagnosis is mild to moderate autistic disorder by the way.

  2. Science Mom October 9, 2012 at 15:53 #

    It’s too bad this isn’t open access. That’s a frightening statistic and would be nice to see community support in the way of setting up home safety checks for parents of special needs children as is done with fire home inspections and informational packets and car seat safety checks.

  3. Andrew October 9, 2012 at 20:32 #

    No indication that the study is biased in favour of parents who reported children running, what running away constitutes or why the children ran away.

    I wonder when a study on Autistic people who ran away from home which actually asked autistic people will come out.

    Usual bias by curists fooling the masses.

    • Lara Lohne October 9, 2012 at 20:51 #

      Actually Andrew, there were very specific questions that were asked in the survey of the of the emotional of the person or child when they did bolt/elope/wander and the results were typically they were happy, usually going after something that they are fond of. As in my son’s case, he loves to run and running away from me and me giving chase turns into a game for him, or he was running after spinning tires on the cars n the street as they would drive by. It wasn’t a self selected survey either, I was contacted directly and personally to participate in it because they wanted to keep it as unbiased as possible. As for asking autistic individuals for their input, most who would elope are not high functioning enough to give their input, because those that are high functioning enough also know enough to not wander from their carers. Only those who are young of severely or profoundly autistic and require a full time carer would do this.

      • Andrew October 10, 2012 at 13:21 #

        Surprisingly quick and well targeted.

        ” there were very specific questions”

        I want to see these specific questions but of course it’s behind a paywall. So yeah… I don’t have any proof of what you say and I cannot accept your opinions as facts.

        Playing hide and seek is not eloping or running away. Playing in the street is not “eloping”. As I expected people are playing with the the definition of running away from home to make it seem like Autistic children just run away and in to danger at every point.

        “most who would elope are not high functioning enough to give their input,”

        What a perfect lie. You can therefore say Any Autistic who says this is overblown or a distortion is “high functioning” and isn’t involved.

        Let me talk about a real issue: Low functioning Autistics who are mentally abused by parents for leaving home. I know one woman Autistic who had her childhood essays burned by parents for leaving them to get married.

      • Lara Lohne October 10, 2012 at 17:31 #

        In regards to this particular survey, elopement, wandering or bolting were all used interchangeably, it does not mean the traditional elopement to get married. Basically it means leaving their care provider and wandering into unsafe territory or situations. So actually running into traffic to try and catch spinning tires, running down the sidewalk toward strangers or a cross street/parking lot entrance and being unaware of the dangers present, in this context is elopement.

        What specific questions do you think you need to know about this survey that makes this such a controversial issue for you? I don’t believe you are fully aware of what this survey was addressing. There is a need with young and low functioning autistic individuals who wander, bolt or elope from their care givers and end up in what could be potentially dangerous situations. These are the individuals with no sense of danger. We aren’t talking about a high functioning individual leaving home to get married, I really do believe you are confusing the two.

      • Sullivan (Matt Carey) October 10, 2012 at 18:13 #

        Andrew,

        in this case, I think we do need to recognize that the study does have limitations. A survey format will have the possibilities for errors. One example that stands out was the tylenol-causes-autism study where the researchers sought out information from groups and lists who were decidedly promoting the idea that vaccines cause autism.

        I would probably give less weight to the quantitative results of this study (exactly how prevalent is wandering/elopement) but consider that it does demonstrate that this is an issue which is more prevalent in autistics and needs more research. The work was in a “chicken and egg” quandary–they wanted to get a diagnostic code in place to be able to get good data and more detailed information, but without good data they couldn’t justify the code.

  4. Science Mom October 10, 2012 at 13:42 #

    ” there were very specific questions”

    I want to see these specific questions but of course it’s behind a paywall. So yeah… I don’t have any proof of what you say and I cannot accept your opinions as facts.

    So pony up the fee to get the study before you act like a jerk towards someone who actually participated in the study.

    Playing hide and seek is not eloping or running away. Playing in the street is not “eloping”. As I expected people are playing with the the definition of running away from home to make it seem like Autistic children just run away and in to danger at every point.

    Nice straw you are setting ablaze there Andrew. Yes elopement is a concern for parents of autist children and it sure isn’t playing hide and seek or playing in the street. Hell my NT child bolts and wanders and he is at the age when he should “know better”. I can only imagine what it is like for parents with non-verbal children. The study also doesn’t “make it seem like Autistic children just run away and in to danger at every point”. It is a huge concern for parents and helpful to establish some numbers and here you are crapping on that for no reason.

    Let me talk about a real issue: Low functioning Autistics who are mentally abused by parents for leaving home. I know one woman Autistic who had her childhood essays burned by parents for leaving them to get married.

    So because “your issue” isn’t covered in this study the issue that was evaluated is not a “real issue”? Get a clue Andrew.

    • Andrew October 10, 2012 at 20:00 #

      An Autistic can always confirm bad arguments are anti-autistic trash when someone comes on to rant at them. Thanks for confirming it.

      A good study would be in to psychological abuse of Autistics by parents. I didn’t say add this in to the current study. You ignore this and snidely intone about not covering “my issue”. Please at least read what someone said, or just stop manipulating their words. Who’s really the jerk here?

      It’s the concern of many “low-functioning” Autistics that their parents try to hold them back, trap them in homes and play the ‘high-functioning’ card online, or invent new lies to trap them in homes through guardianship.

      You said too bad it isn’t open access. It’s okay when you complain but when an Autistic challenges it you decide to pour scorn on your target instead.

      But we cannot avoid the elephant in the room, the real criminal suggestions. All children have a potential from run from parents, and parents do worry: That does not justify targeting Autistics with badly moderated studies implying they run away because of Autism. An Autistic complained about it because it was a lie, and all you are doing is playing on paranoid fears to justify discriminatory hate.

      • Lara Lohne October 10, 2012 at 20:15 #

        While it is true that many NT children will also run from parents, the focus of this particular study was how often it occurred in autistics versus NTs and at what ages. Generally, the frame of mind or emotional state of the individual was taken into consideration, as well as whether or not they respond when they are called back. From the results I received of the survey via email after it was completed, most autistics were not angry or afraid when they bolted, but were happy or excited, and were generally heading toward something that pleases them. While I had NT children who would also wander, or run, generally, after a certain age, typically younger then 4, it stopped and they would come back when called and told to come back. The same is not true of my autistic child. He doesn’t respond to his name all the time and doesn’t come back when told, and even after the age of 4 is still prone to wander or bolt away from me if I don’t have a tight grip on his leash. It is not uncommon for autistic individuals to have no sense of danger, that is why this particular issue can be worrying for care givers of autistic children and low functioning adolescents and adults. I am well aware of issues of abuse, neglect and various other forms of cruelty toward autistic individuals. That is more of a criminal issue then a psychological one, and was not the focus of this particular survey.

      • Science Mom October 10, 2012 at 21:16 #

        An Autistic can always confirm bad arguments are anti-autistic trash when someone comes on to rant at them. Thanks for confirming it.

        I’m sorry you feel that way Andrew but you’re the one who came in swinging. Don’t be shocked when I act in kind and hold you to the same standard as anyone else.

        A good study would be in to psychological abuse of Autistics by parents. I didn’t say add this in to the current study. You ignore this and snidely intone about not covering “my issue”. Please at least read what someone said, or just stop manipulating their words. Who’s really the jerk here?

        Yes it would be a good study along with a plethora of other issues facing autists. If it isn’t something you were criticising for not being included in this study then either why bring it up in the first place or clarify that it is something you would also like examined in the future?

        You said too bad it isn’t open access. It’s okay when you complain but when an Autistic challenges it you decide to pour scorn on your target instead.

        Please don’t play that card with me; if you have deficits expressing yourself then you should preclude your statements with that; you’ll get a much different reception. You used the fact that the study was behind a paywall to denigrate the experience of a study participant. I not-so-nicely suggested you get the study before jumping on someone else.

        But we cannot avoid the elephant in the room, the real criminal suggestions. All children have a potential from run from parents, and parents do worry: That does not justify targeting Autistics with badly moderated studies implying they run away because of Autism. An Autistic complained about it because it was a lie, and all you are doing is playing on paranoid fears to justify discriminatory hate.

        I really don’t get this invective Andrew. This is an important issue that interferes with the quality of life for autists and their parents. Yes all children bolt and wander; this quantifies the differences between NT children and child autists. Furthermore, to reiterate what Ms. Lohne has stated, child autists are probably in more danger than NT children as far as being able to discern danger and the ability to communicate their contact information. It would be discriminatory to ignore this issue.

    • Andrew October 12, 2012 at 00:02 #

      ” This is an important issue that interferes with the quality of life for autists and their parents.”

      That. Doesn’t. Justify. Biased. Scientific. Studies.

      If anything is an important issue here it is using hysteria generating from the possibility of Autistic children running away in order to generate lying statistics. Stop trying to make this about me or my invective. I’m not important, the truth is. And the truth is against you.

      “It would be discriminatory to ignore this issue.”

      Since I am Autistic and you aren’t, I sure as hell know what’s discriminatory. Making up some fake bad thing about Autism sure is a hell lot more discriminatory! You complain about invective yet your comments are specifically designed to rile Autistics up it seems!

      • Science Mom October 12, 2012 at 13:26 #

        ” This is an important issue that interferes with the quality of life for autists and their parents.”

        That. Doesn’t. Justify. Biased. Scientific. Studies.

        A.) You haven’t read the study so how you can qualify it as biased, what the bias(es) is/are and if they were controlled for is beyond me.

        B.) This issue may not affect you but it does for others; there is nothing wrong and everything right about examining a quality of life issue for autists and their care-givers.

        “It would be discriminatory to ignore this issue.”

        Since I am Autistic and you aren’t, I sure as hell know what’s discriminatory. Making up some fake bad thing about Autism sure is a hell lot more discriminatory! You complain about invective yet your comments are specifically designed to rile Autistics up it seems!

        You have yet to present any argument that this study is “discriminatory”. That’s like me saying that as a scientist I find studies examining retracted papers and the reasons to be discriminatory. If you are claiming that elopement of autists is fake then I suggest you provide some evidence for that statement.

      • Lara Lohne October 12, 2012 at 17:07 #

        Andrew,
        You are autistic, and obviously wandering and elopement is not an issue for you. I’m guessing you also don’t require a personal care giver to go about your daily life. You probably have been able to develop a sense of danger and know not to walk into busy traffic and only to cross the street when you have the crossing right of way. A 5 year old autistic who isn’t as high functioning as you does not have those same defenses in place. He may develop them over time, but as of yet, he doesn’t get that walking out in front of a car going 45 is dangerous. For me and my son, this is a real issue.

        I have a friend in California, she has a profoundly autistic son who is 23 years old. He also has epilepsy, is non-verbal and has SIB. He requires 1 to 1 care 24 hours a day and cannot be left on his own because he will wander off to places that are dangerous for him, due to lack of the ability to judge what is dangerous and what is safe. For this woman, this is a very real issue.

        You are one autistic, you are not the only autistic, and you need to keep in mind that not all autistics are as high functioning, or as old and experienced, as you are. I’m sorry you take personal offense in this topic, but for those of us who care for people that this happens to on a regular basis, it is real and I personally am grateful that they are looking at it, even if it is in a rudimentary fashion. I don’t want my son to ‘learn the hard way’ about how dangerous certain things can be, because they are dangerous enough that one time of experiencing that danger, may be enough to end his life.

    • Andrew October 12, 2012 at 00:05 #

      “I’m sorry you feel that way Andrew but you’re the one who came in swinging.”

      I don’t care about these blame games. Stop making it about your ego or my ego. Autism is more important.

  5. DT35 October 12, 2012 at 21:03 #

    So what is your position, Andrew? That autistics don’t run away any more than neurotypicals; when they do run away, it is a response to physical or emotional abuse; and if a study shows something different, it’s a lie?

    • Jennifer February 18, 2015 at 12:19 #

      First, I love your post.Second, I’ll admit that I’m confused by the Autism is NOT a “mental helath” issue. It is neurological, neither good nor bad, just DIFFERENT. I don’t know how to explain right now but isn’t the mind something that’s on the brain and created by the brain, doesn’t that makes the mind something neurological and isn’t mental anything about the mind?I know the term is used more for mental illness but aren’t mental/neurological conditions all part of the mental helath issues?I always get confused with the line between mental and neurological since it’s all in the brain for me. Maybe what people call mental helath is only for mental illness, I agree that autism is not a mental illness, not that there is nothing wrong in having those. Maybe I’m just too literal with mental/neurological/psychological/etc.

    • Elbeulah February 20, 2015 at 15:16 #

      !I so wish people would reliase we can speak for ourselves. I find the few autism parents I know in real life aren’t interested in anything I have to say, so the point of simply not engaging with me as though I don’t exist. I can only think they might not accept their autistic child will grow into an autistic adult. Yet, I wish more than anything I’d been prepared for an autistic adulthood, rather than spending the first forty years of my life trying to be neurotypical.

Trackbacks/Pingbacks

  1. Three Causes of Self-Injurious Behaviors within ASD :The Psych Life - October 10, 2012

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    […] Occurrence and Family Impact of Elopement in Children With Autism Spectrum Disorders […]

  3. Elopement autism | Keglerscorner - March 10, 2013

    […] Occurrence and Family Impact of Elopement in Children With Autism …Oct 9, 2012 … In the past few years there has been a great deal of discussion on wandering and autism. Wandering as in elopement, running away, leaving a … […]

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