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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Showing posts with label drowning. Show all posts
Showing posts with label drowning. Show all posts
Monday, 8 January 2018
Tuesday, 11 April 2017
Risk of death by injury and autism
"Individuals with autism appear to be at substantially heightened risk for death from injury."
That was the research bottom line published by Joseph Guan & Guohua Li [1] from Columbia University Medical Center, who trawled the accumulated data included in the US National Vital Statistics System screening death certificates issued between 1999 and 2014. Of the approximate 32 million death certificates issued, researchers found that some 1300 people diagnosed as on the autism spectrum had their death recorded and recorded with mention alongside the word 'autism'.
A few details about those 1367 deaths among those with autism compared with the not-autism population have captured media headlines (see here) not least the finding that: "The mean age at death for individuals with autism was 36.2 years (SD = 20.9 years), compared with 72.0 years (SD = 19.2 years) for the general population." This data tallies with other reports on premature mortality in relation to autism (see here) and also in respect of some of the over-represented comorbidity that accompanies the label such as learning (intellectual) disability (see here). I might also forward the idea that another over-represented comorbidity - attention-deficit hyperactivity disorder (ADHD) - appearing alongside autism (see here) might also have some relevance when it specifically comes to injury risk too (see here). Researchers noted that around a quarter of deaths recorded for those with autism were attributed to injury - quite a bit more than compared to those general population death stats - and that suffocation, asphyxiation and drowning made up a considerable portion of those deaths following injury.
OK a step back is required here. This data does not mean that those diagnosed on the autism spectrum have a life expectancy of 36.2 years (plus or minus 20 years or so). I know it might seem a little obvious to make such a statement but I do want to make that point clear. The data did find that premature mortality due to injury and non-injury does seem to 'hit younger' when it comes to autism (bear in mind also that the majority of recorded deaths where autism was mentioned were not caused as a result of injury).
Appreciating that some people have voiced their concern about these and other aspects of the Guan/Li paper (see here) I have to say that I'm slightly more focused on the pattern of death by injury reported over above whether the data is truly representative of the autistic population at large or not. Death by drowning is sadly something all too familiar when it comes to autism, particularly when taken in the context of the wandering/elopement data (see here). Yes, for some, autism, the presentation of autism and autism+, can be a life-limiting diagnosis. I know that last sentence does not make for great PR but readers should look at it in the context of other important peer-reviewed information too (see here and see here).
So, what can be done to improve life prospects for those on the autism spectrum? Well, outside of moves to reduce the multitude of health inequalities that seem to coincide with receipt of a diagnosis of autism (see here and see here for examples), there are some practical solutions. Lessons about water safety and learning to swim represent a first course of action [2] and something that may have various other beneficial effects in terms of physical fitness (another issue that pervades the autism research literature). I appreciate that some children (and adults) might be a little nervous around water but with a bit of creative thinking (i.e. making swimming fun and not just about learning to do lengths of the pool) I don't doubt that learning such a life-saving skill can be made much more palatable. In the age where cinemas and theatres have 'autism-friendly' screenings, surely autism-friendly swimming sessions can't be too far behind?
In relation to reducing other potential causes of death such as suffocation and asphyxia, there may be other things to consider. I'm assuming that food and eating patterns may be something to be looked at when it comes to problems such as choking. This means education about eating small morsels of food and the importance of properly chewing food before swallowing so reducing the frequency of food packing for example. This might also have implications as and when medication is taken orally (via the mouth) and little details such as ensuring that a person drinks some water with any tablets that need to be taken. You may again think this is a rather obvious thing to say but sadly, there have been occasions when choking on food [3] has led to rather extreme consequences in the context of the autism spectrum.
In short, death by injury in relation to autism is not something that should ever be accepted. Yes, injury and accidents happen, but that's not to say nothing that can be done to prevent some/many of them...
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[1] Guan J. & Li G. Injury Mortality in Individuals With Autism. American Journal of Public Health. 2017. Mar 21.
[2] Pan CY. Effects of water exercise swimming program on aquatic skills and social behaviors in children with autism spectrum disorders. Autism. 2010 Jan;14(1):9-28.
[3] Hudson A. et al. Packing and Problematic Feeding Behaviors in CHARGE Syndrome: A Qualitative Analysis. Int J Pediatr Otorhinolaryngol. 2016 Mar;82:107-15.
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Guan, J., & Li, G. (2017). Injury Mortality in Individuals With Autism American Journal of Public Health DOI: 10.2105/AJPH.2017.303696
That was the research bottom line published by Joseph Guan & Guohua Li [1] from Columbia University Medical Center, who trawled the accumulated data included in the US National Vital Statistics System screening death certificates issued between 1999 and 2014. Of the approximate 32 million death certificates issued, researchers found that some 1300 people diagnosed as on the autism spectrum had their death recorded and recorded with mention alongside the word 'autism'.
A few details about those 1367 deaths among those with autism compared with the not-autism population have captured media headlines (see here) not least the finding that: "The mean age at death for individuals with autism was 36.2 years (SD = 20.9 years), compared with 72.0 years (SD = 19.2 years) for the general population." This data tallies with other reports on premature mortality in relation to autism (see here) and also in respect of some of the over-represented comorbidity that accompanies the label such as learning (intellectual) disability (see here). I might also forward the idea that another over-represented comorbidity - attention-deficit hyperactivity disorder (ADHD) - appearing alongside autism (see here) might also have some relevance when it specifically comes to injury risk too (see here). Researchers noted that around a quarter of deaths recorded for those with autism were attributed to injury - quite a bit more than compared to those general population death stats - and that suffocation, asphyxiation and drowning made up a considerable portion of those deaths following injury.
OK a step back is required here. This data does not mean that those diagnosed on the autism spectrum have a life expectancy of 36.2 years (plus or minus 20 years or so). I know it might seem a little obvious to make such a statement but I do want to make that point clear. The data did find that premature mortality due to injury and non-injury does seem to 'hit younger' when it comes to autism (bear in mind also that the majority of recorded deaths where autism was mentioned were not caused as a result of injury).
Appreciating that some people have voiced their concern about these and other aspects of the Guan/Li paper (see here) I have to say that I'm slightly more focused on the pattern of death by injury reported over above whether the data is truly representative of the autistic population at large or not. Death by drowning is sadly something all too familiar when it comes to autism, particularly when taken in the context of the wandering/elopement data (see here). Yes, for some, autism, the presentation of autism and autism+, can be a life-limiting diagnosis. I know that last sentence does not make for great PR but readers should look at it in the context of other important peer-reviewed information too (see here and see here).
So, what can be done to improve life prospects for those on the autism spectrum? Well, outside of moves to reduce the multitude of health inequalities that seem to coincide with receipt of a diagnosis of autism (see here and see here for examples), there are some practical solutions. Lessons about water safety and learning to swim represent a first course of action [2] and something that may have various other beneficial effects in terms of physical fitness (another issue that pervades the autism research literature). I appreciate that some children (and adults) might be a little nervous around water but with a bit of creative thinking (i.e. making swimming fun and not just about learning to do lengths of the pool) I don't doubt that learning such a life-saving skill can be made much more palatable. In the age where cinemas and theatres have 'autism-friendly' screenings, surely autism-friendly swimming sessions can't be too far behind?
In relation to reducing other potential causes of death such as suffocation and asphyxia, there may be other things to consider. I'm assuming that food and eating patterns may be something to be looked at when it comes to problems such as choking. This means education about eating small morsels of food and the importance of properly chewing food before swallowing so reducing the frequency of food packing for example. This might also have implications as and when medication is taken orally (via the mouth) and little details such as ensuring that a person drinks some water with any tablets that need to be taken. You may again think this is a rather obvious thing to say but sadly, there have been occasions when choking on food [3] has led to rather extreme consequences in the context of the autism spectrum.
In short, death by injury in relation to autism is not something that should ever be accepted. Yes, injury and accidents happen, but that's not to say nothing that can be done to prevent some/many of them...
----------
[1] Guan J. & Li G. Injury Mortality in Individuals With Autism. American Journal of Public Health. 2017. Mar 21.
[2] Pan CY. Effects of water exercise swimming program on aquatic skills and social behaviors in children with autism spectrum disorders. Autism. 2010 Jan;14(1):9-28.
[3] Hudson A. et al. Packing and Problematic Feeding Behaviors in CHARGE Syndrome: A Qualitative Analysis. Int J Pediatr Otorhinolaryngol. 2016 Mar;82:107-15.
----------
Guan, J., & Li, G. (2017). Injury Mortality in Individuals With Autism American Journal of Public Health DOI: 10.2105/AJPH.2017.303696
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