Preventing, yes preventing, elopement in kids with autism

I know the word 'prevention' is a dirty word for some in relation to some aspects of autism. When however 'prevention' is used in the context of elopement or wandering and autism, the word(s) take on an altogether different meaning...

The word prevention is used in the study findings reported by Silvia Pereira‐Smith and colleagues [1] and their focus on "the use of preventive measures that target elopement" in relation to autism. They add that "elopement can lead to dire consequences." Seldom have truer words been spoken in relation to this issue with autism in mind (see here).

For those of you who might know too much about this topic, wandering is an important issue in both autism research and practice (see here and see here). Figures suggest that around 1 in 4 children diagnosed with an autism spectrum disorder (ASD) will consistently wander from home or school or other place, but this issue does not seem to be as widely talked about or parents/caregivers consistently given as much information about it as they should.

Pereira-Smith and colleagues asked nearly 400 parent-caregivers of children and young people diagnosed with an autism spectrum disorder (ASD) about their [child's] experience of wandering/elopement. They asked questions about who did it, "preventive measure use, and sociodemographic characteristics" of their cohort.

Results: "Two hundred and sixty-seven caregivers (68%) reported elopement by their child." That figure is way over the 1 in 4 estimate that has been previously banded around. Researchers also found that wandering was not confined to any one "sociodemographic characteristics, nor with any specific comorbidity or neurobehavioral medication." Kids and young people across the autism spectrum wandered. That being said: "Children with limited communication skills were more likely to have a history of elopement." As for that word 'prevention', most families used "lock(s) at top of doors" with other families utilising "handicap permits, signs/visual markers, or tracking devices" albeit to a lesser degree than locks. Researchers conclude that "use of specific preventive measures can help guide recommendations for this dangerous comorbid symptom, and provide information needed for future studies to assess the efficacy of various preventive measures." Who would argue with that?

Oh, and just to let you know that there are some autism organisations who have really taken a lead in this area (see here)...

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[1] Pereira-Smith S. et al. Preventing elopement in children with autism spectrum disorder. Autism Res. 2019 Apr 29.

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Even more on wandering and autism

I don't know if it's just me being more attentive but I seem to be more regularly seeing media reports of children and adults diagnosed with autism or autism spectrum disorder (ASD) wandering from their family/caregiver home or other place. Some of these media reports end happily insofar as the person being found safe and unharmed to then be reunited with their loved ones; on occasion, using some important previously learned survival skills. Other reports however, don't have such a happy ending...

The paper by Laura McLaughlin and colleagues [1] brings the topic of wandering (elopement) back into research view, observing that in their cohort of nearly 1500 parents talking about their children diagnosed with an ASD: "22.4% of the children wandered from their home or yard and 24.6% from a public place more than monthly." Such research continues a theme down the years illustrating how wandering is an important issue when it comes to autism (see here) and how for some, wandering can lead to a very, very final outcome (see here).

Researchers distributed their anonymous on-line questionnaire about various aspects related to wandering through several autism-related organisations, encouraging parents of children diagnosed with autism/ASD to respond. This wasn't your typical 'does your child wander?' questionnaire, but instead also incorporated several related items such as "the use of electronic tracking devices,... use of restraints and/or seclusion to prevent wandering at school, and receipt of guidance about wandering."

About a quarter of parents said their child wanders (and wanders quite routinely) and the effects of such behaviour seemed to be quite wide-ranging. Not only did wandering reflect a worry for many parents - "48.6% and 58.7% of parents were moderately/very worried about their child wandering from home or yard or a public place" - but almost three-quarters of parents reported that wandering concerns affected "decisions to let their child spend time with friends or family in their absence." With such sentiments being expressed, it's not difficult to see why some parents with children with autism have to announce 'why I can never die' (see here). Perhaps also surprisingly, McLaughlin et al reported that only a third of parents in their cohort "had previously received any counseling about wandering."

I still maintain that wandering represents one of the most important 'issues' linked to autism (see here). Lots more resources need to be dedicated to the hows-and-whys of such behaviour (see here) and what can be done to reduce risks all round. I also think more needs to be done to talk about wandering in the context of autism and provide parents/caregivers with the information and tools ('best available evidence') about wandering. Given also the seemingly important relationship between wandering and water safety in particular (see here), I'm minded to again vocalise the (preferential) need to teach water and swimming skills as and when a child is diagnosed...

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[1] McLaughlin L. et al. Wandering by Children with Autism Spectrum Disorder: Key Clinical Factors and the Role of Schools and Pediatricians. J Dev Behav Pediatr. 2018 Jul 6.

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On unintentional drowning deaths in children with autism

Sometimes science seems to be science for the sake of science. Y'know, findings are reported and published and are met with either 'so what' or 'what does this mean for me?' sentiments, particularly when dealing with potentially abstract concepts.

The findings published by Joseph Guan and Guohua Li [1] most definitely DO NOT fall into such a category. Their covering of a topic which has potential life-limiting implications - unintentional drowning deaths - in the context of autism is worthwhile repeating again and again and again until everyone sits up and takes note. I might add that other previous research from this authorship team similarly evoke such sit-up-and-listen sentiments (see here).

What did the authors do? Well, simply put, they scanned the Lexis-Nexis® Academic database looking for all newspaper entries covering the terms autism, drowning and boy/girl from the beginning of January 2000 until May 2017 in the United States. They analysed the collected data; retrieving specific details such as "time of day and distance from residence" when it came to such reports.

Results: "During January 2000 through May 2017, US newspapers reported a total of 23 fatal unintentional drowning incidents involving children under 15 years of age with ASD [autism spectrum disorder]." Let's just reflect on that a moment. Twenty-three children / young adults with autism who drowned. Twenty-three lives tragically cut short. Twenty-three families left grieving.

Also: "Data about proximity of the water body to the victim’s residence were available for 11 (47.8%) of the incidents, with all of them within 1000 m of the victim’s residence (mean = 290.7 ± 231.5 m)." And also: "The time of day at which victims were reported missing was available for 15 (65.2%) of 23 incidents, with 2 (13.3%) being in the morning (0:00–11:59), 11 (73.3%) being in the afternoon (12:00–17:59), and 2 (13.3%) being in the evening (18:00 PM – 23:59)." And finally: "Wandering was the most commonly reported activity that led to drowning, accounting for 73.9% of the incidents."

I could go on about the limitations of this study as highlighted by the authors - "small sample size and the availability of information reported in newspaper articles" - but really I have to ask 'does it matter?' The answer: no, such study limitation don't really make too much difference to the final - very final - outcomes reported on.

The fact that wandering (elopement if you will) was a feature of many of the cases found is not new news (see here). It reiterates once again that resources aplenty need to be put into reducing incidences of wandering or at least allowing parents and law enforcement and other agencies every opportunity to locate wandering children/adults as quickly as possible. Some might worry about things like civil liberties when it comes to monitoring someones movements. But in current times, when someone can be tracked by their mobile/cell phone use for example, I'd respectively disagree with such 'civil rights are being impinged' sentiments. Imagine if you will, if one of the various 'tracking' devices currently aimed at those on the autism spectrum was given to every child / every family free of charge at the point of diagnosis? A good use of money methinks...

Water safety is another important part of the current findings. There is science out there talking about how learning to swim might have quite a lot of positives when it comes to autism [2]; perhaps the most important being learning water safety skills. Who would argue with that? And if one wanted to be proactive in this area, how about making water safety and swimming lessons a compulsory part of the learning curriculum for everyone diagnosed with an autism spectrum disorder? Again, a very good use of money methinks and you never know, there may be other benefits too.

I'm not saying that there aren't individual circumstances around every one of those drowning deaths discussed by Guan & Li. I'm not saying that every death could have been avoided. What however I do believe is that armed with the knowledge that drowning is a significant cause of premature death in the context of autism, and knowing a little more about the general circumstances around some of those deaths, there are things that can potentially be done to mitigate future risks to the autistic population and potentially save lives.

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[1] Guan J. & Li G. Characteristics of unintentional drowning deaths in children with autism spectrum disorder. Injury Epidemiology 2017; 4: 32.

[2] Alaniz ML. et al. The Effectiveness of Aquatic Group Therapy for Improving Water Safety and Social Interactions in Children with Autism Spectrum Disorder: A Pilot Program. J Autism Dev Disord. 2017 Dec;47(12):4006-4017.

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Wandering and autism continued

I probably don't need to provide most readers with too much background information on the topic of wandering/elopement and autism given the multitude of news reports that have been, and continue to be, generated on this worrying behaviour. The article titled: 'The Life and Death of Avonte Oquendo' pretty much sums up the very saddest outcome of wandering, and how in some respects, autism can potentially be a life-limiting condition.

I do however think it is important to discuss the findings reported by Bridget Kiely and colleagues [1] (open-access) and how science continues to contribute to questions such as "the prevalence and correlates of wandering in a nationally representative sample of school-age children in the United States with developmental conditions." I might add that I've seen very little in the peer-reviewed domain about wandering behaviour and autism here in Blighty (UK) or indeed, in other countries outside of the USA. Another important research inequality methinks...

The Kiely paper, which has itself received some press attention (see here), starts with the idea that as a result of the increasing numbers of people being diagnosed with an autism spectrum disorder (ASD) (see here) the likelihood that issues such as wandering or elopement will happen is going to increase. You can um-and-ah about the reasons for the increase in cases (bearing in mind findings such as the one by Russell and colleagues [2] talked about recently) but by mass action, increasing numbers of people with autism = increasing numbers of wandering/elopement episodes.

"Data were obtained from the 2011 Survey of Pathways to Diagnosis and Services (“Pathways”), a cross sectional, nationally representative survey of the parents and guardians of children with special health care needs (CSHCN) ages 6–17 with a current or past parent-reported diagnosis of ASD, ID [intellectual disability], and/or DD [developmental delay]." In all some 4000 parents and guardians of children with ASD, ID and/or DD were surveyed from a total population of some 7500. A proportion of those 4000 parents/guardians provided some data on their children incorporating elements from "the Children’s Social Behavior Questionnaire (CSBQ)." The issue of wandering/elopement "was assessed based on four questions about the child’s history of wandering from various locations within the previous twelve months" and data was divided according to diagnosis.

Results: "Among all children with a current developmental condition (ASD, ID, and/or DD), the overall rate of elopement within the previous 12 months was 26.7%." Readers should bear in mind the emphasis on elopement within 'the previous 12 months'. Further: "Compared to the ID/DD-only group, the odds of elopement were higher for the ASD-only group... and the ASD+ID/DD-group." This is based on participant groupings including: "492 had ASD-only; 924 had ASD plus ID and/or DD; and 2,085 had ID and/or DD without ASD."

The authors also observed that "children who were between the ages of 6 and 11 were more likely to have eloped than those that were 12–17 at the time of the Pathways interview" but there was little to see when it came to factors such as "household income, sex, or race/ethnicity." Elopement behaviour, it appears, crosses socio-economic differences. They did however report some associations between wandering behaviour and some of the clinical data reported using the CSBQ among other things. So; "wanderers were more likely than non-wanderers to show sudden mood changes...; to over-react to everything and everyone...; to get angry quickly...; not to realize when there is danger...; to have difficulty distinguishing between strangers and familiar people...; to be disobedient...; to panic in new situations or if change occurs...; to remain clammed up in new situations or if change occurs...; and to get lost easily." At this point I'm also going to introduce a new measure that also covers the topic of 'disappearing behaviour' [3] that might figure in future work in this area.

There is little more for me to say on this topic outside of the presented results. As I've indicated in previous posts (see here), in amongst all the 'differences' that divide people when it comes to the label of autism, moves to reduce the potentially devastating consequences of elopement/wandering when it occurs alongside autism seemingly unites everyone. Statistics that point to accidental death potentially including wandering as being contributory to early mortality in autism (see here) provide a stark message that investment in technology in particular, is an important area to minimise the potential adverse effects of wandering. Teaching skills such as those related to pedestrian safety [4] could also be a good idea. I might liekwise add that the involvement of water in several cases of death following wandering in relation to autism should also persuade policy-makers to provide something like free swimming classes to those on the autism spectrum?

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[1] Kiely B. et al. Prevalence and Correlates of Elopement in a Nationally Representative Sample of Children with Developmental Disabilities in the United States. PLoS ONE. 2016; 11(2): e0148337.

[2] Russell G. et al. Changes in diagnosis rates and behavioural traits of autism spectrum disorder over time. British Journal of Psychiatry Open. 2015; 1: 110-115.

[3] Tyrer P. et al. The Problem Behaviour Checklist: short scale to assess challenging behaviours. British Journal of Psychiatry Open. 2016; 2: 45-49.

[4] Harriage B. et al. An Evaluation of a Parent Implemented In Situ Pedestrian Safety Skills Intervention for Individuals with Autism. J Autism Dev Disord. 2016 Feb 10.

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Kiely, B., Migdal, T., Vettam, S., & Adesman, A. (2016). Prevalence and Correlates of Elopement in a Nationally Representative Sample of Children with Developmental Disabilities in the United States PLOS ONE, 11 (2) DOI: 10.1371/journal.pone.0148337

Wandering and autism

It is every parent's nightmare. You take your eye of your child for 10 seconds and they're off. "But they were there a second ago" is the thought running through your mind as the eyes dart randomly about trying to spot the coat, T-shirt or dress, as just about every worse case scenario runs through your mind.

That scene (which I have been through myself on more than one occasion) demonstrates one of the more heart-pounding moments of raising young children. Suffice to say that 99.99% of the time, no harm comes from the little mites absconding as they are found and brought back to the fold to the sound of "I was so worried about you..." (or words to that effect). It certainly does little good to the blood pressure though.

Wandering and elopement in cases of autism spectrum disorders is something which has been discussed for quite a while now. Following reports of a number of children (and adults) with autism wandering off, sometimes with the very worst fears being realised, I remember some moves a while back to highlight the issue. The publication of the recent paper by Connie Anderson and colleagues* now reinforces the views that (a) wandering is actually quite prevalent in children with autism compared with siblings and (b) a lot more needs to be done to reduce the risk and consequences of elopement.

There's little point in me going into great detail to explain the study and its particulars when it can come from one of the author's themselves as per this post on the Autism Speaks blog and an intricate description of the findings for the ScienceDaily report on this work. Suffice to say that out of over 1200 parents of children with autism questioned as part of the IAN project about the wandering and elopement experiences of their child, about half were reported to have engaged or tried to engage in at least one instance of wandering behaviour after the age of 4. As per the media reporting on this paper, half of those wandering had been gone long enough to cause concern, there were quite a few 'close calls' and law enforcement were involved in a sizable minority of cases. The severity of presentation of autistic symptoms also seemed to be an influence on the likelihood of wandering.

I began this post talking about young children doing what young children do and wandering off as various curiosities catch their attention. It's important to make a distinction between that scenario and what is being detailed in the current study in children with autism over 4 years of age. Although bearing in mind it is quite difficult to interpret 'intent' when such wandering episodes occur, there was also a suggestion that quite a few cases of wandering in autism highlighted in the current study were not random acts but rather had planning, intent and goal-seeking in mind outside of other conditions where a decline in cognitive function is [partially] attributed to elopement events**.

There are quite a few factors arising from this latest data and the other very limited evidence in this area (see here***). Developing suitable intervention programs both to curb wandering before it happens and minimise instances of elopement where there is a history of it is one of the suggestions being tabled. Indeed this is not the first time that such measures have been suggested or indeed researched as per research like this one**** and this one*****, both with an ABA slant to them.

Then there is better awareness and education for all of us, the public at large. Indeed when I tweeted about the publication of this study, I noticed one particular comment was received shown below.

I assume the inference was that the relationship between autism and wandering/elopement was already taken as read. If this is the case, then at least the latest publicity for the Anderson study might serve as a useful top-up to that knowledge. Hopefully however this will not be all that autism becomes in the public eye.

There are perhaps certain groups of people for who this study will be of particular interest. I'm thinking specifically of law enforcement agencies, who are often at the sharp end of dealing with extreme cases of wandering where autism is a factor. So for example, them knowing a little bit of background about the wanderer in question - their interests -  and any link to possible clues as to where they might have gone as a result, and indeed the daily living skills or level of functioning of the person concerned. Also whether things like a medicines routine is being followed and the impact on any comorbidity such as epilepsy. Without trying to sound too much like 'Big Brother' one speculates as to whether some kind of register of some of these details could already be held by such agencies so as to formulate as quick a response as possible following notification of wandering.

Finally technology surely must play a hand in any pre-emptive or intervention strategy for wandering in autism. Without trying to provide product placements, there are already some interesting products on the market predominantly based on GPS for tracking wanderers. Again based on research predominantly in conditions like Alzheimer's disease, there may be other tracking options also potentially open to wandering in autism as represented by the wearable technologies (see here) and indeed the revolution in things like smart fabrics.

The wide-ranging interest in the Anderson paper and its results are testament to how important this issue is to a large portion of the autism community. Whilst the definition of autism implies that the condition is not life-threatening, what this research serves to illustrate is that the net effects of the behaviours associated with autism can, in some cases, place that person at some significant risk. It is with that thought in mind, that this issue deserves much greater research attention.

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* Anderson C. et al. Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics. October 2012.

** Holtzer R. et al. Psychopathological features in Alzheimer's disease: course and relationship with cognitive status. J Am Geriatr Soc. 2003; 51: 953-960.

*** Matson JL. & Rivet TT. Characteristics of challenging behaviours in adults with autistic disorder, PDD-NOS, and intellectual disability. J Intellect Dev Disabil. 2008; 33: 323-329.

**** Call NA. Differential reinforcement with and without blocking as treatment for elopement. J Appl Behav Anal. 2011; 44: 903–907.

***** Falcomata TS. et al. Assessment and treatment of elopement maintained by access to stereotypy. J Appl Behav Anal. 2010; 43: 513–517.

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Connie Anderson, J. Kiely Law, Amy Daniels, Catherine Rice, David S. Mandell, Louis Hagopian, & Paul A. Law (2012). Occurrence and family impact of elopement in children with autism spectrum disorders Pediatrics : 10.1542/peds.2012-0762