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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Showing posts with label swimming. Show all posts
Showing posts with label swimming. Show all posts
Friday, 17 August 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...
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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
Friday, 27 May 2016
Wandering and autism continued... yet again
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I know that I'm probably starting to sound like a broken record on the topic of wandering (elopement) and autism on this blog (see here and see here and see here) but I am yet again going to briefly talk about peer-reviewed research in this area simply because it's just too damned important not to.This time around the results from Catherine Rice and colleagues [1] are the source of my musings and the conclusion that: "wandering among children with ASD [autism spectrum disorder], regardless of intellectual disability status, is relatively common." Based on the analysis of data from The Survey of Pathways to Diagnosis and Services (SPDS) initiative, where specific questions about 'wandering and wandering prevention' are asked (see page 29) researchers reported that: "For children with special healthcare needs diagnosed with either ASD, intellectual disability, or both, wandering or becoming lost during the previous year was reported for more than 1 in 4 children." A diagnosis of ASD seemed to be a key factor in the frequency of wandering, where those with additional learning disability were the most likely to wander (37% of the sample) and figures for those without intellectual disability came in at about 32%.
As per previous occasions when I've blogged about this topic, the differences (kingdoms) that might divide various groups/people when it comes to autism tend to take second place when it comes to tackling this issue and preventing (yes, preventing) wandering from turning into something rather more ominous. After all, there are a range of measures that can be employed to reduce the frequency of wandering/elopement and, if and when it does happen, reduce the probability of 'adverse outcomes' for the wanderer. First and foremost I would say, is for more people to take note of actual accounts about wandering as per those discussed by Solomon and Lawlor [2] for example. One can learn a lot about the circumstances around why wandering occurs and the different types of wandering (including the issue of bolting) from listening to parent and caregiver accounts. They are the experts on their own children and no doubt some of those accounts might generalise to more than just one child.
Next up are the various instruments that could be used to help find wanderers in a timely fashion. I'm thinking specifically about technology such as GPS trackers and the need for science to provide some further insight into the effectiveness of such items and what needs to be done to improve their effectiveness. I appreciate that 'tracking people' might have implications for things like civil liberties but just remember that the mobile (cell) phone you're carrying might not also be bad at telling others where you are. Improving autism awareness among first responders such as police and related agencies may also help them in their efforts if and when wandering becomes an issue.
Finally and bearing in mind that 'if you've met one person with autism, you've met one autistic person' (or words to that effect) is the importance of teaching things like road and water safety to those on the autism spectrum. I appreciate that the concept of 'danger' might not be something easily taught to some children and communication issues can be barriers to effective teaching. But, one should not assume that it is impossible to do [2], alongside the strategies for making lessons like swimming classes for example 'fun' as well as potentially lifesaving. And yes, swimming lessons can be particularly fun for many children on the autism spectrum [3].
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[1] Rice CE. et al. Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability. J Pediatr. 2016 May 2. pii: S0022-3476(16)00428-5.
[2] Call NA. et al. Clinical outcomes of behavioral treatments for elopement in individuals with autism spectrum disorder and other developmental disabilities. Autism. 2016 May 12. pii: 1362361316644732.
[3] Eversole M. et al. Leisure Activity Enjoyment of Children with Autism Spectrum Disorders. J Autism Dev Disord. 2016 Jan;46(1):10-20.
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Rice, C., Zablotsky, B., Avila, R., Colpe, L., Schieve, L., Pringle, B., & Blumberg, S. (2016). Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability The Journal of Pediatrics DOI: 10.1016/j.jpeds.2016.03.047
Saturday, 7 May 2016
The darker side to swimming with dolphins?
Described under the heading of a 'Challenging Case', the paper by Randall Phelps and colleagues [1] titled 'The Curse of the Dolphins: Cognitive Decline and Psychosis' highlights an intriguing case report potentially suggestive of a darker side to the idea of swimming with dolphins.Yes, you did hear me right - dolphins - those aquatic mammals regarded as one of the earth's most intelligent creatures and the suggestion that swimming with them might somehow 'impact' on aspects of a person's functioning particularly with certain conditions/diagnoses/labels in mind. With autism specifically in mind, swimming with dolphins has been listed as an 'intervention' although the science has not exactly been wholly positive in terms of effects [2] and ethical issues with such 'animal-assisted' intervention still remain.
Phelps et al recount how Isela, "an 11-year-old Mexican-American girl with mild intellectual disability" went swimming with dolphins during a holiday with her parents. Days afterwards she was described as awakening in the night "with laughing spells" and during the day "she was pacing, aggressive, and had a decline in self-care and communication skills." After quite a few examinations and tests (bearing in mind her learning disability diagnosis and subsequent decline was not conducive to significant self-report) she was diagnosed with disorganized schizophrenia with psychosis. The laughter, it was assumed, was in response to hallucinations; the introduction of risperidone was associated with various improvements: "reduced inappropriate laughing spells, reduced pacing, as well as improved eating, sleeping, communication, and self-care." Throughout: "Her parents attributed the symptoms to the dolphins."
Although some might make light of this case report and perhaps even reiterate the old 'correlation is not the same as causation' mantra, I personally find this to be an intriguing description. Appreciating that issues like psychosis are probably over-represented when it comes to learning disability [3] and that there may be several possible 'triggers' for such symptoms [4], the possibility of a darker side to swimming with dolphins is perhaps deserving of further investigation. As to the question of mechanisms, well, I'm sure that there may be psychological explanations that might rank up there as per what is known about the effects of severe stress and anxiety when it comes to [some] psychosis. One must not for example, assume that every child enjoys the company of animals, particularly when combined with an element such as water for example. Other potentially important factors... well, I have to ask whether there could have been some infective agent involved either in the water or on the animal(s) given what we are beginning to understand about infection and mental health (see here for example). Indeed, with news that 'The world’s most successful bug hits dolphins' (that's T. gondii to you and me) there could even be some further work to do in light of other claims in this area (see here).
The messages are don't automatically discard the thoughts and suspicions of parents and perhaps leave our aquatic mammalian friends to get on with their lives...
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[1] Phelps R. et al. The Curse of the Dolphins: Cognitive Decline and Psychosis. J Dev Behav Pediatr. 2016 Apr 18.
[2] Fiksdal BL. et al. Dolphin-Assisted Therapy: Claims versus Evidence. Autism Res Treat. 2012;2012:839792.
[3] Aman H. et al. Prevalence of nonaffective psychosis in intellectually disabled clients: systematic review and meta-analysis. Psychiatr Genet. 2016 Apr 19.
[4] Galdos PM. et al. Puberty and the onset of psychosis. Schizophr Res. 1993 Jun;10(1):7-14.
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Phelps R, Tsai A, Hagen A, Pinter J, Smith R, & Stein MT (2016). The Curse of the Dolphins: Cognitive Decline and Psychosis. Journal of developmental and behavioral pediatrics : JDBP PMID: 27096574
Friday, 19 February 2016
Behavioural outcomes in autism following exercise
It's our birthday today (this blog I mean). We've reached the ripe old age of 5. Many happy returns Questioning Answers. According to some people (one person anyway) "Those who can, publish. Those who can't, blog". Personally, I enjoy doing a bit of both and when it comes to peer-reviewed science, quantity does not always trump quality. That's my excuse anyway.And onwards...
Today I'm talking about the paper by Emily Bremer and colleagues [1] who set out to "systematically search and critically analyse the literature pertaining to behavioural outcomes of exercise interventions for individuals with autism spectrum disorder aged ⩽16 years."
Researchers concluded that pretty consistently, various exercise interventions "can result in improvements to numerous behavioural outcomes including stereotypic behaviours, social-emotional functioning, cognition and attention." At the very least, adverse side-effects and harms were minimal and it goes without saying that any sort of physical activity is normally quite a good thing anyway. The sorts of activity included in the review ranged from swimming to yoga/dance and quite a bit in-between. Further: "Horseback riding and martial arts interventions may produce the greatest results with moderate to large effect sizes, respectively."
Martial arts in particular cutting the scientific mustard? Well, I'm impressed. Indeed I've said as much about the use of martial arts such as karate for autism before (see here and see here) realising that certain aspects of the discipline such as kumite might not initially be to everyone's taste. That being said, karate and other martial arts might tend to instil a degree of confidence in their practitioners [2], so even those who might not be natural-born 'fighters' might eventually develop a liking (and talent) for this side of the activity. A sprinkling of competition can also sometimes be a good thing (head to 2m36s to see how kata can translate into action)...
Of course the authors are correct in their assertion that further: "well-controlled designs, standardized assessments, larger sample sizes and longitudinal follow-ups is necessary". I might add that a focus on the biology associated with using particular exercise regimes as well as the behavioural effects might also be a good idea so as to potentially ascertain what it is about particular sports/pastimes that seem to produce the behavioural outcomes noted.
I think more people are cottoning on to the idea that sports and physical activity might hold lots of different promises for many people with autism. Most people on the autism spectrum do not lack the capacity to engage in sports and exercise (see here) but again, it tends to be about the provision of opportunities and putting forward a good case as to why taking up a physical activity might be a good thing (see here). I say this keeping in mind individual tastes.
Finally, with again the martial arts in mind, at least one of the governing bodies here in Blighty is starting to open doors. The question is: what's stopping you? Kiai!
Music to close, and given some enthusiasm from some of my brood for Ferris Bueller's Day Off, Yello and Oh Yeah...
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[1] Bremer E. et al. A systematic review of the behavioural outcomes following exercise interventions for children and youth with autism spectrum disorder. Autism. 2016. Jan 28.
[2] Chen MA. & Cheesman DJ. Mental toughness of mixed martial arts athletes at different levels of competition. Percept Mot Skills. 2013 Jun;116(3):905-17.
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Bremer, E., Crozier, M., & Lloyd, M. (2016). A systematic review of the behavioural outcomes following exercise interventions for children and youth with autism spectrum disorder Autism DOI: 10.1177/1362361315616002
Wednesday, 2 July 2014
Quality of life and autism
The BBC ran an interesting article on their website recently titled: Happiness and disability. Discussions about the disability paradox - whereby some people with often significant and persistent disability report experiencing a good or excellent quality of life (QoL) - got me thinking about QoL and in particular, how it might relate to the very wide and very heterogeneous autism spectrum. I might add that I am not insinuating that everyone diagnosed on the autism spectrum are 'disabled' but rather that as per the UK definition of the word (see here), "a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities" is a hallmark for quite a proportion of people on the autism spectrum.
At the same time, the findings from the literature review by Chiang and Wineman [1] should really be making people sit up and take note: "The majority of the individuals with ASD [autism spectrum disorder] had poor QoL [quality of life]". Indeed, not for the first time have such sentiments been voiced in the research literature as per another meta-analysis by van Heijst & Geurts [2] who reported: "Across the lifespan, people with autism experience a much lower quality of life compared to people without autism".
Quality of life by the way, can mean quite a few things but for the purposes of this post I'm talking about overall wellbeing including things like life satisfaction and health including mental and physical health.
As stated, QoL is often a very subjective thing influenced by all manner of variables, some social, some biological and some psychological. As one example I'd draw your attention to the concept of resilience [3] and the effect that can have but there are many others.
QoL is also a dynamic concept which can and does change for everyone following life's ebbs and flows. If I happened to scoop the lottery tomorrow I'd wager that my QoL would probably increase a few points (albeit with potential caveats). Likewise, when it comes to one of the most important influences on QoL, physical health, some people will know what happens to QoL when health deteriorates or when faced with the prospect of even short-term restrictions to normal activities.
I should also mention that just because I'm talking about research in the most part suggesting poorer QoL in relation to autism, I'm not trying to stigmatise or anything like that. Poor QoL is not an exclusively autism-related feature; just as I appreciate that for some people on the autism spectrum, QoL is actually pretty good.
A trawl through some of the research literature in this area highlights a few common themes.
Social contact and networks
I've talked before on this blog about issues such as loneliness and how detrimental it might potentially be for one's health (see here). Loneliness or a lack of friends or social support can be an issue for some on the autism spectrum, although I'd hasten to add that sweeping generalisations about everyone with autism craving lots of social contact might be misplaced; not everyone wants to be the life and soul of the party. There has been some focus on how loneliness and social isolation can and do impact on QoL with autism in mind. The paper by Renty & Roeyers [4] talked about how the availability of a "supportive social network" seemed to be an important factor when it came to QoL in high-functioning adults with autism. Just as an aside, I didn't pick the term 'high-functioning', the authors did.
The paper by Micah Mazurek [5] (a favourite researcher on this blog) similarly pointed to the detrimental effects that loneliness seemed to have in cases of autism on subsequent QoL. Based on self-report (something which I'll be coming to shortly) "loneliness was associated with increased depression and anxiety and decreased life satisfaction and self-esteem, even after controlling for symptoms of autism spectrum disorders". A "greater quantity and quality of friendships were associated with decreased loneliness" was another rather obvious finding, implying one possible target for possible intervention. Perhaps also relevant to the whole issue of QoL and autism was the focus on comorbidity in this paper: "number of friends provided unique independent effects in predicting self-esteem, depression, and anxiety above and beyond the effects of loneliness".
Social contact / participation issues were also addressed in the paper by Lee and colleagues [6] looking children with autism with QoL in mind. They reported: "Children with autism were significantly less likely to attend religious services, more likely to miss school, and less likely to participate in organized activities". Likewise, Orsmond and colleagues [7] reported similar things: "Young adults with an ASD were significantly more likely to never see friends, never get called by friends, never be invited to activities, and be socially isolated". I could go on but I won't. Suffice to say that social contact and participation seem to be big influencers on QoL in quite a few cases of autism.
Comorbidity
Having already mentioned how certain comorbidity might also be linked to measures of QoL it's also worthwhile going through some of the other research in this area. I'm pretty enthusiastic that comorbidity when it comes to autism is something deserving of a lot more investigation (see here). By comorbidity, I'm talking about both psychological comorbidity such as depression and anxiety (especially anxiety) all the way up to something like psychosis (see here) or schizophrenia (see here) and the other more somatic comorbidity reported in some cases of autism (see here). I don't also doubt that there is a relationship between psychologically-manifesting comorbidity and physiological comorbidity with autism in mind (see here).
Anyhow, I start this section with reference to the paper by Bauman [8] who very succinctly described how medical comorbidity can be a "challenge to diagnosis and treatment" when it comes to autism. Perhaps most relevant to the topic of this post was the assertion: "Many of these medical conditions are treatable, often resulting in improved developmental gains and quality of life for the patient and family". Certainly looking back to a post I did fairly recently on undetected medical comorbidity and autism (see here) I wouldn't argue with such a sentence. Included in the area of health and medical comorbidity potentially impacting on QoL in autism is the various research looking at issues like obesity and autism [9] and conditions which can have the most severe impact on QoL such as epilepsy and even something like self-injury and aggression.
The paper by van Steensel and colleagues [10] looking at how anxiety and anxiety disorders comorbid to autism "predicted a lower quality of life" is an important finding. As previously mentioned, anxiety is something which can be absolutely disabling when it comes to autism (see here) potentially even over and above the experience of more core symptoms for some people. It's little wonder that when present, it has such a huge impact on QoL.
Employment
I've singled out employment as being an important area for QoL in autism because there is quite a lot of research on the topic. I know there are many more moves nowadays to raise the issue of under-employment following a diagnosis of autism, and certainly it seems like common-sense to assume that having a job - a meaningful and appropriately paid job - will almost certainly impact on a persons QoL, whether they have autism or not. The findings from Mavranezouli and colleagues [11] provide as stark a message as is possible in terms of the current employment prospects when someone is in receipt of a diagnosis on the autism spectrum. The findings from Barneveld and colleagues [12] highlighted how most people with autism included in that study "were less satisfied about their work or education.." than other groups examined based on the finding that quite a large proportion of this cohort were without paid employment and "many were social security recipients". Other studies have arrived at similar conclusions [13]. I probably don't need to say much more on the topic of unemployment and how it may adversely affect QoL in autism aside from perhaps also putting the opposing viewpoint across that employment under the wrong conditions can also be a source of stress and anxiety for some on the spectrum [14] and onwards lead to a reduction in QoL. It's about finding a balance.
Who reports?
I've included this section to reflect the body of research literature looking at similarities/differences in terms of who reports about QoL when it comes to autism: first-person accounts and reports vs. other persons. This issue has surfaced in discussions on other topics; for example, the work looking at anxiety and autism [15]. The paper by Sheldrick and colleagues [16] talked about differing opinions of QoL in adolescents with autism based on self-report and parental reports. Ikdea and colleagues [17] found a similar situation. There are lots of ways that second-hand reports can 'bias' very subjective concepts like QoL; parents and caregivers for example, may be more inclined to make comparisons with other, non-autistic populations which will invariably impact on how the QoL of their own children is perceived. The paper from Shipman and colleagues [18] might have noted something like this with their results: "parents of adolescents [with autism] reporting lower QoL when compared with adolescent reports". The main point from this collected work being that, where feasible, measures of QoL in autism should be reported by those with autism.
Intervention
Although intervention is not a universally welcomed word when it comes to the very wide and very heterogeneous autism spectrum, I'm pretty sure that this is one area where there might be more agreement among the autism community. In the broadest sense, intervention to improve QoL for people on the autism spectrum implies addressing some of the topics I've previously discussed in this post as and when required. Opportunities seems to be an important word.
I'm a great believer in sport and leisure as being roads to improving health and wellbeing for everyone and onwards QoL. Autism is no exception as per studies like the one from Fragala-Pinkham and colleagues [19] talking about a group swimming and aquatic exercise program for kids with autism. Martial arts programs are another option; also potentially having some interesting knock-on effects based on the use of Kata training as per the study by Bahrami and colleagues [20] talked about in a previous post. Attendance at leisure clubs and societies might also be something considered to influence QoL in autism following the results from García-Villamisar and colleagues [21]. Importantly, they also talked about stress reduction being linked to improved QoL. For adults, similar social and group situations may likewise be useful to consider, bearing in mind that using something like social media as a substitute for social contact might not necessarily help with issues such as loneliness [22].
The slightly more contentious topic of interventions aimed at reducing or ameliorating the signs and symptoms of autism being potentially linked to an improved QoL is another side to this story. I've touched upon the issue of QoL in relation to some of my peer-reviewed work looking at dietary intervention in cases of autism [23]. We didn't actually measure QoL (although we perhaps should have done) but certainly considering the study by Kushak and colleagues [24] talked about in a previous post (see here) highlighting how lactose intolerance "may contribute to abdominal discomfort, pain and observed aberrant behavior" one might see how something like pain could adversely affect QoL. Certainly this adds a new dimension to the chatter about the resurrected PETA advert recently (see here) which I've kinda covered in another post.
The paper by Ramirez and colleagues [25] follows a similar line of thought and how their intervention led to a "reduction in aberrant behaviors, increased gastrointestinal function, and improved quality of life". I might add that I'm just using that case report as an example rather than making any specific recommendation. And then there is the question of medication as a means to improving QoL in cases of autism. At least one review paper has hinted that where measured, QoL can be positively influenced by certain medications [26] but I dare say that individual measures of QoL are going to be governed by factors such as response to medication and the presence or not of those all-important side-effects.
More to do
Although I have gone on a bit in this post, I've only really scratched the surface when it comes to the various research on QoL in autism. I've not talked about the possibility of gender differences in QoL with autism in mind, nor how autism might impact on the QoL for other family members including siblings. Whether QoL measurements might also differ across the autism spectrum as a function of factors such as optimal outcome (see here) or cognitive abilities or even ageing are other areas for exploration. These are perhaps ramblings for another day. What does come across from the collected literature in this area is that QoL is an important concept in relation to autism. Whilst not everyone on the autism spectrum presents with a poorer QoL than other groups or the more general population, further efforts should be directed towards those that need and want improvements in their QoL in order for lives to be lived to their full potential as per the findings from Ahlström & Wentz [27].
Music to close, and based on the assumption that live music therapy may be beneficial to QoL for some... here is the Boss who is arguably one of the best live acts ever to grace the musical stage: Glory Days.
------------
[1] Chiang H-M. & Wineman I. Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature. Res Autism Spec Disord. 2014; 8:974-986.
[2] van Heijst BF. & Geurts HM. Quality of life in autism across the lifespan: A meta-analysis. Autism. 2014 Jan 17.
[3] Hildon Z. et al. Examining resilience of quality of life in the face of health-related and psychosocial adversity at older ages: what is "right" about the way we age? Gerontologist. 2010 Feb;50(1):36-47.
[4] Renty JO. & Roeyers H. Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism. 2006 Sep;10(5):511-24.
[5] Mazurek MO. Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism. 2014 Apr;18(3):223-32.
[6] Lee LC. et al. Children with autism: quality of life and parental concerns. J Autism Dev Disord. 2008 Jul;38(6):1147-60.
[7] Orsmond GI. et al. Social participation among young adults with an autism spectrum disorder. J Autism Dev Disord. 2013 Nov;43(11):2710-9.
[8] Bauman ML. Medical comorbidities in autism: challenges to diagnosis and treatment. Neurotherapeutics. 2010 Jul;7(3):320-7.
[9] Curtin C. et al. Obesity in children with autism spectrum disorder. Harv Rev Psychiatry. 2014 Mar-Apr;22(2):93-103.
[10] van Steensel FJ. et al. Anxiety and quality of life: clinically anxious children with and without autism spectrum disorders compared. J Clin Child Adolesc Psychol. 2012;41(6):731-8.
[11] Mavranezouli I. et al. The cost-effectiveness of supported employment for adults with autism in the United Kingdom. Autism. 2014 Apr 29.
[12] Barneveld PS. et al. Quality of life: a case-controlled long-term follow-up study, comparing young high-functioning adults with autism spectrum disorders with adults with other psychiatric disorders diagnosed in childhood. Compr Psychiatry. 2014 Feb;55(2):302-10.
[13] Griffith GM. et al. 'I just don't fit anywhere': support experiences and future support needs of individuals with Asperger syndrome in middle adulthood. Autism. 2012 Sep;16(5):532-46.
[14] Baldwin S. et al. Employment Activities and Experiences of Adults with High-Functioning Autism and Asperger's Disorder. J Autism Dev Disord. 2014 Apr 9.
[15] Storch EA. et al. Multiple informant agreement on the anxiety disorders interview schedule in youth with autism spectrum disorders. J Child Adolesc Psychopharmacol. 2012 Aug;22(4):292-9.
[16] Sheldrick RC. et al. Quality of life of adolescents with autism spectrum disorders: concordance among adolescents' self-reports, parents' reports, and parents' proxy reports. Qual Life Res. 2012 Feb;21(1):53-7.
[17] Ikeda E. et al. Assessment of quality of life in children and youth with autism spectrum disorder: a critical review. Qual Life Res. 2014 May;23(4):1069-85.
[18] Shipman DL. et al. Quality of life in adolescents with autism spectrum disorders: reliability and validity of self-reports. J Dev Behav Pediatr. 2011 Feb-Mar;32(2):85-9.
[19] Fragala-Pinkham MA. et al. Group swimming and aquatic exercise programme for children with autism spectrum disorders: a pilot study. Dev Neurorehabil. 2011;14(4):230-41.
[20] Bahrami F. et al. Kata techniques training consistently decreases stereotypy in children with autism spectrum disorder. Res Dev Disabil. 2012 Jul-Aug;33(4):1183-93.
[21] García-Villamisar DA. & Dattilo J. Effects of a leisure programme on quality of life and stress of individuals with ASD. J Intellect Disabil Res. 2010 Jul;54(7):611-9.
[22] Mazurek MO. Social media use among adults with autism spectrum disorders. Computers in Huam Behaviour. 2013; 29: 1709-1714.
[23] Whiteley P. et al. Gluten- and casein-free dietary intervention for autism spectrum conditions. Front Hum Neurosci. 2013 Jan 4;6:344.
[24] Kushak RI. et al. Intestinal disaccharidase activity in patients with autism: effect of age, gender, and intestinal inflammation. Autism. 2011 May;15(3):285-94.
[25] Ramirez PL. et al. Improvements in Behavioral Symptoms following Antibiotic Therapy in a 14-Year-Old Male with Autism. Case Rep Psychiatry. 2013;2013:239034.
[26] Moyal WN. et al. Quality of life in children and adolescents with autism spectrum disorders: what is known about the effects of pharmacotherapy? Paediatr Drugs. 2014 Apr;16(2):123-8.
[27] Ahlström BH. & Wentz E. Difficulties in everyday life: Young persons with attention-deficit/hyperactivity disorder and autism spectrum disorders perspectives. A chat-log analysis. Int J Qual Stud Health Well-being. 2014 May 28;9:23376.
----------
Chiang, H., & Wineman, I. (2014). Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature Research in Autism Spectrum Disorders, 8 (8), 974-986 DOI: 10.1016/j.rasd.2014.05.003
At the same time, the findings from the literature review by Chiang and Wineman [1] should really be making people sit up and take note: "The majority of the individuals with ASD [autism spectrum disorder] had poor QoL [quality of life]". Indeed, not for the first time have such sentiments been voiced in the research literature as per another meta-analysis by van Heijst & Geurts [2] who reported: "Across the lifespan, people with autism experience a much lower quality of life compared to people without autism".
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| What a view... @ Wikipedia |
Quality of life by the way, can mean quite a few things but for the purposes of this post I'm talking about overall wellbeing including things like life satisfaction and health including mental and physical health.
As stated, QoL is often a very subjective thing influenced by all manner of variables, some social, some biological and some psychological. As one example I'd draw your attention to the concept of resilience [3] and the effect that can have but there are many others.
QoL is also a dynamic concept which can and does change for everyone following life's ebbs and flows. If I happened to scoop the lottery tomorrow I'd wager that my QoL would probably increase a few points (albeit with potential caveats). Likewise, when it comes to one of the most important influences on QoL, physical health, some people will know what happens to QoL when health deteriorates or when faced with the prospect of even short-term restrictions to normal activities.
I should also mention that just because I'm talking about research in the most part suggesting poorer QoL in relation to autism, I'm not trying to stigmatise or anything like that. Poor QoL is not an exclusively autism-related feature; just as I appreciate that for some people on the autism spectrum, QoL is actually pretty good.
A trawl through some of the research literature in this area highlights a few common themes.
Social contact and networks
I've talked before on this blog about issues such as loneliness and how detrimental it might potentially be for one's health (see here). Loneliness or a lack of friends or social support can be an issue for some on the autism spectrum, although I'd hasten to add that sweeping generalisations about everyone with autism craving lots of social contact might be misplaced; not everyone wants to be the life and soul of the party. There has been some focus on how loneliness and social isolation can and do impact on QoL with autism in mind. The paper by Renty & Roeyers [4] talked about how the availability of a "supportive social network" seemed to be an important factor when it came to QoL in high-functioning adults with autism. Just as an aside, I didn't pick the term 'high-functioning', the authors did.
The paper by Micah Mazurek [5] (a favourite researcher on this blog) similarly pointed to the detrimental effects that loneliness seemed to have in cases of autism on subsequent QoL. Based on self-report (something which I'll be coming to shortly) "loneliness was associated with increased depression and anxiety and decreased life satisfaction and self-esteem, even after controlling for symptoms of autism spectrum disorders". A "greater quantity and quality of friendships were associated with decreased loneliness" was another rather obvious finding, implying one possible target for possible intervention. Perhaps also relevant to the whole issue of QoL and autism was the focus on comorbidity in this paper: "number of friends provided unique independent effects in predicting self-esteem, depression, and anxiety above and beyond the effects of loneliness".
Social contact / participation issues were also addressed in the paper by Lee and colleagues [6] looking children with autism with QoL in mind. They reported: "Children with autism were significantly less likely to attend religious services, more likely to miss school, and less likely to participate in organized activities". Likewise, Orsmond and colleagues [7] reported similar things: "Young adults with an ASD were significantly more likely to never see friends, never get called by friends, never be invited to activities, and be socially isolated". I could go on but I won't. Suffice to say that social contact and participation seem to be big influencers on QoL in quite a few cases of autism.
Comorbidity
Having already mentioned how certain comorbidity might also be linked to measures of QoL it's also worthwhile going through some of the other research in this area. I'm pretty enthusiastic that comorbidity when it comes to autism is something deserving of a lot more investigation (see here). By comorbidity, I'm talking about both psychological comorbidity such as depression and anxiety (especially anxiety) all the way up to something like psychosis (see here) or schizophrenia (see here) and the other more somatic comorbidity reported in some cases of autism (see here). I don't also doubt that there is a relationship between psychologically-manifesting comorbidity and physiological comorbidity with autism in mind (see here).
Anyhow, I start this section with reference to the paper by Bauman [8] who very succinctly described how medical comorbidity can be a "challenge to diagnosis and treatment" when it comes to autism. Perhaps most relevant to the topic of this post was the assertion: "Many of these medical conditions are treatable, often resulting in improved developmental gains and quality of life for the patient and family". Certainly looking back to a post I did fairly recently on undetected medical comorbidity and autism (see here) I wouldn't argue with such a sentence. Included in the area of health and medical comorbidity potentially impacting on QoL in autism is the various research looking at issues like obesity and autism [9] and conditions which can have the most severe impact on QoL such as epilepsy and even something like self-injury and aggression.
The paper by van Steensel and colleagues [10] looking at how anxiety and anxiety disorders comorbid to autism "predicted a lower quality of life" is an important finding. As previously mentioned, anxiety is something which can be absolutely disabling when it comes to autism (see here) potentially even over and above the experience of more core symptoms for some people. It's little wonder that when present, it has such a huge impact on QoL.
Employment
I've singled out employment as being an important area for QoL in autism because there is quite a lot of research on the topic. I know there are many more moves nowadays to raise the issue of under-employment following a diagnosis of autism, and certainly it seems like common-sense to assume that having a job - a meaningful and appropriately paid job - will almost certainly impact on a persons QoL, whether they have autism or not. The findings from Mavranezouli and colleagues [11] provide as stark a message as is possible in terms of the current employment prospects when someone is in receipt of a diagnosis on the autism spectrum. The findings from Barneveld and colleagues [12] highlighted how most people with autism included in that study "were less satisfied about their work or education.." than other groups examined based on the finding that quite a large proportion of this cohort were without paid employment and "many were social security recipients". Other studies have arrived at similar conclusions [13]. I probably don't need to say much more on the topic of unemployment and how it may adversely affect QoL in autism aside from perhaps also putting the opposing viewpoint across that employment under the wrong conditions can also be a source of stress and anxiety for some on the spectrum [14] and onwards lead to a reduction in QoL. It's about finding a balance.
Who reports?
I've included this section to reflect the body of research literature looking at similarities/differences in terms of who reports about QoL when it comes to autism: first-person accounts and reports vs. other persons. This issue has surfaced in discussions on other topics; for example, the work looking at anxiety and autism [15]. The paper by Sheldrick and colleagues [16] talked about differing opinions of QoL in adolescents with autism based on self-report and parental reports. Ikdea and colleagues [17] found a similar situation. There are lots of ways that second-hand reports can 'bias' very subjective concepts like QoL; parents and caregivers for example, may be more inclined to make comparisons with other, non-autistic populations which will invariably impact on how the QoL of their own children is perceived. The paper from Shipman and colleagues [18] might have noted something like this with their results: "parents of adolescents [with autism] reporting lower QoL when compared with adolescent reports". The main point from this collected work being that, where feasible, measures of QoL in autism should be reported by those with autism.
Intervention
Although intervention is not a universally welcomed word when it comes to the very wide and very heterogeneous autism spectrum, I'm pretty sure that this is one area where there might be more agreement among the autism community. In the broadest sense, intervention to improve QoL for people on the autism spectrum implies addressing some of the topics I've previously discussed in this post as and when required. Opportunities seems to be an important word.
I'm a great believer in sport and leisure as being roads to improving health and wellbeing for everyone and onwards QoL. Autism is no exception as per studies like the one from Fragala-Pinkham and colleagues [19] talking about a group swimming and aquatic exercise program for kids with autism. Martial arts programs are another option; also potentially having some interesting knock-on effects based on the use of Kata training as per the study by Bahrami and colleagues [20] talked about in a previous post. Attendance at leisure clubs and societies might also be something considered to influence QoL in autism following the results from García-Villamisar and colleagues [21]. Importantly, they also talked about stress reduction being linked to improved QoL. For adults, similar social and group situations may likewise be useful to consider, bearing in mind that using something like social media as a substitute for social contact might not necessarily help with issues such as loneliness [22].
The slightly more contentious topic of interventions aimed at reducing or ameliorating the signs and symptoms of autism being potentially linked to an improved QoL is another side to this story. I've touched upon the issue of QoL in relation to some of my peer-reviewed work looking at dietary intervention in cases of autism [23]. We didn't actually measure QoL (although we perhaps should have done) but certainly considering the study by Kushak and colleagues [24] talked about in a previous post (see here) highlighting how lactose intolerance "may contribute to abdominal discomfort, pain and observed aberrant behavior" one might see how something like pain could adversely affect QoL. Certainly this adds a new dimension to the chatter about the resurrected PETA advert recently (see here) which I've kinda covered in another post.
The paper by Ramirez and colleagues [25] follows a similar line of thought and how their intervention led to a "reduction in aberrant behaviors, increased gastrointestinal function, and improved quality of life". I might add that I'm just using that case report as an example rather than making any specific recommendation. And then there is the question of medication as a means to improving QoL in cases of autism. At least one review paper has hinted that where measured, QoL can be positively influenced by certain medications [26] but I dare say that individual measures of QoL are going to be governed by factors such as response to medication and the presence or not of those all-important side-effects.
More to do
Although I have gone on a bit in this post, I've only really scratched the surface when it comes to the various research on QoL in autism. I've not talked about the possibility of gender differences in QoL with autism in mind, nor how autism might impact on the QoL for other family members including siblings. Whether QoL measurements might also differ across the autism spectrum as a function of factors such as optimal outcome (see here) or cognitive abilities or even ageing are other areas for exploration. These are perhaps ramblings for another day. What does come across from the collected literature in this area is that QoL is an important concept in relation to autism. Whilst not everyone on the autism spectrum presents with a poorer QoL than other groups or the more general population, further efforts should be directed towards those that need and want improvements in their QoL in order for lives to be lived to their full potential as per the findings from Ahlström & Wentz [27].
Music to close, and based on the assumption that live music therapy may be beneficial to QoL for some... here is the Boss who is arguably one of the best live acts ever to grace the musical stage: Glory Days.
------------
[1] Chiang H-M. & Wineman I. Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature. Res Autism Spec Disord. 2014; 8:974-986.
[2] van Heijst BF. & Geurts HM. Quality of life in autism across the lifespan: A meta-analysis. Autism. 2014 Jan 17.
[3] Hildon Z. et al. Examining resilience of quality of life in the face of health-related and psychosocial adversity at older ages: what is "right" about the way we age? Gerontologist. 2010 Feb;50(1):36-47.
[4] Renty JO. & Roeyers H. Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism. 2006 Sep;10(5):511-24.
[5] Mazurek MO. Loneliness, friendship, and well-being in adults with autism spectrum disorders. Autism. 2014 Apr;18(3):223-32.
[6] Lee LC. et al. Children with autism: quality of life and parental concerns. J Autism Dev Disord. 2008 Jul;38(6):1147-60.
[7] Orsmond GI. et al. Social participation among young adults with an autism spectrum disorder. J Autism Dev Disord. 2013 Nov;43(11):2710-9.
[8] Bauman ML. Medical comorbidities in autism: challenges to diagnosis and treatment. Neurotherapeutics. 2010 Jul;7(3):320-7.
[9] Curtin C. et al. Obesity in children with autism spectrum disorder. Harv Rev Psychiatry. 2014 Mar-Apr;22(2):93-103.
[10] van Steensel FJ. et al. Anxiety and quality of life: clinically anxious children with and without autism spectrum disorders compared. J Clin Child Adolesc Psychol. 2012;41(6):731-8.
[11] Mavranezouli I. et al. The cost-effectiveness of supported employment for adults with autism in the United Kingdom. Autism. 2014 Apr 29.
[12] Barneveld PS. et al. Quality of life: a case-controlled long-term follow-up study, comparing young high-functioning adults with autism spectrum disorders with adults with other psychiatric disorders diagnosed in childhood. Compr Psychiatry. 2014 Feb;55(2):302-10.
[13] Griffith GM. et al. 'I just don't fit anywhere': support experiences and future support needs of individuals with Asperger syndrome in middle adulthood. Autism. 2012 Sep;16(5):532-46.
[14] Baldwin S. et al. Employment Activities and Experiences of Adults with High-Functioning Autism and Asperger's Disorder. J Autism Dev Disord. 2014 Apr 9.
[15] Storch EA. et al. Multiple informant agreement on the anxiety disorders interview schedule in youth with autism spectrum disorders. J Child Adolesc Psychopharmacol. 2012 Aug;22(4):292-9.
[16] Sheldrick RC. et al. Quality of life of adolescents with autism spectrum disorders: concordance among adolescents' self-reports, parents' reports, and parents' proxy reports. Qual Life Res. 2012 Feb;21(1):53-7.
[17] Ikeda E. et al. Assessment of quality of life in children and youth with autism spectrum disorder: a critical review. Qual Life Res. 2014 May;23(4):1069-85.
[18] Shipman DL. et al. Quality of life in adolescents with autism spectrum disorders: reliability and validity of self-reports. J Dev Behav Pediatr. 2011 Feb-Mar;32(2):85-9.
[19] Fragala-Pinkham MA. et al. Group swimming and aquatic exercise programme for children with autism spectrum disorders: a pilot study. Dev Neurorehabil. 2011;14(4):230-41.
[20] Bahrami F. et al. Kata techniques training consistently decreases stereotypy in children with autism spectrum disorder. Res Dev Disabil. 2012 Jul-Aug;33(4):1183-93.
[21] García-Villamisar DA. & Dattilo J. Effects of a leisure programme on quality of life and stress of individuals with ASD. J Intellect Disabil Res. 2010 Jul;54(7):611-9.
[22] Mazurek MO. Social media use among adults with autism spectrum disorders. Computers in Huam Behaviour. 2013; 29: 1709-1714.
[23] Whiteley P. et al. Gluten- and casein-free dietary intervention for autism spectrum conditions. Front Hum Neurosci. 2013 Jan 4;6:344.
[24] Kushak RI. et al. Intestinal disaccharidase activity in patients with autism: effect of age, gender, and intestinal inflammation. Autism. 2011 May;15(3):285-94.
[25] Ramirez PL. et al. Improvements in Behavioral Symptoms following Antibiotic Therapy in a 14-Year-Old Male with Autism. Case Rep Psychiatry. 2013;2013:239034.
[26] Moyal WN. et al. Quality of life in children and adolescents with autism spectrum disorders: what is known about the effects of pharmacotherapy? Paediatr Drugs. 2014 Apr;16(2):123-8.
[27] Ahlström BH. & Wentz E. Difficulties in everyday life: Young persons with attention-deficit/hyperactivity disorder and autism spectrum disorders perspectives. A chat-log analysis. Int J Qual Stud Health Well-being. 2014 May 28;9:23376.
----------
Chiang, H., & Wineman, I. (2014). Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature Research in Autism Spectrum Disorders, 8 (8), 974-986 DOI: 10.1016/j.rasd.2014.05.003
Monday, 18 November 2013
Sedentary behaviours and autism
Standing up is better for your health than sitting down according to the BBC website. As one of those people known to wear a pedometer pretty regularly and generally be quite 'obsessive' about my 10,000 steps per day (or should that be 6000 steps per day [1]), I wasn't surprised by some of the discussions on this topic and how quite a proportion of the population at large could really do with standing up and indeed, moving a little more each day.
We are all seemingly bombarded these days with information mixed in with a healthy sprinkling of science suggesting that one needn't be pounding the streets for hours on end in order to get a little bit more healthy. It's all about making sure that we aren't too sedentary and perhaps enjoying a little more of the great outdoors even if at a leisurely pace.
With this in mind, I was very interested to read the paper by Avivia Must and colleagues [2] who upon comparing a small-ish group of children diagnosed with an autism spectrum condition (n=53) with typically developing peers (n=58), found that "children with autism spectrum disorder spent an hour more in sedentary behaviors on weekdays compared to typically developing children". Further Must et al also reported quite a bit of that increase in sedentary behaviour was apportioned to an increase in screen time (TV and computer) and "sedentary behaiour is linked to relative weight status" in the group of children with autism. Think screen time and autism and I think about the work of Micah Mazurek as exemplified by this paper [3] and more recently with the issue of sleep in mind [4].
Some more digging into the various research done on exercise and autism revealed some equally interesting findings. The same authorship group have looked at this issue before as per the article by Bandini and colleagues [5] who suggested based on the same spread of participants (autism, n=53, not-autism, n=58) "moderate and vigorous activity was similar in children with ASD (50.0 minutes/day and typically developing children 57.1 minutes/day)". That being said, the authors did report that children with autism participated in "fewer physical activities and for less time according to parental report" highlighting potential issues with the measurement schedule employed to examine activity levels.
These and other similar research on activity levels and autism perhaps represent the other side of the research coin in terms of the increasing interest in the use of technology to improve quality of life for those on the autism spectrum. The rise and rise of the use of tablet technology for example, whilst often a significant step forward for some on the autism spectrum, not necessarily being great news for levels of physical activity if replacing time that could be used on non-sedentary activities.
The question of whether physical activity might also have some added benefits outside of just physical health has also been looked at. Oriel and colleagues [6] reported that "aerobic exercise prior to classroom activities may improve academic responding in young children with autism spectrum disorder". I'm not for one minute suggesting that every classroom should be installing a treadmill so as to increase 'correct' responses to I assume, questions posed by the teacher. But as I've indicated on a previous post about stress (see here), physical exercise often goes so much further than just improving physical health and that applies to autism too [7]. Other research reviews whilst highlighting a lack of good quality evidence in this area, have nonetheless suggested that exercise participation might have a least some short-term bearing on the presentation of facets of autism also [8].
With all the mind, the question of what kind of activities might increase activity levels in cases of autism in childhood has similarly been examined in autism research circles.
Walking is often a good place to start when it comes to increasing activity levels. The paper by Pitetti and colleagues [9] reported that even for those at the more severe end of the autism spectrum, the implementation of a walking program may well have some important benefits. Correspondingly, I've heard a few people talk about young people and adults with autism (again towards the more severe end of the autism spectrum) who very much enjoy long (sometimes very long) walks in all weathers. One wonders whether they might know more than us about what makes them feel good?
Swimming is another option to consider as per the paper by Fragala-Pinkham and colleagues [10]. Granted their results weren't astounding in terms of fitness outcomes for some participants (although contrasted with previous work of theirs [11]) but one might suggest that anything which increases activity is worthwhile. That and the often life-saving skills that are gained by learning to swim. Indeed, Pan [12] reported on some other potentially important changes noted following implementation of a water exercise swimming program with a small group of children with autism.
And then there are other exercise options to consider. Horseback riding (see here) assuming no fear of such animals and something which has cropped up before on this blog, the various martial arts (see this post) might also be good ways of increasing activity levels and decreasing sedentary behaviours. I suppose it's all about finding something that the individual enjoys.
Recognising that a sedentary lifestyle is not really ideal for anyone, there are perhaps some important lessons to be learned about increasing activity levels among children and adults with autism. Physical activity is an important part of physical health, and as we've seen in relation to schizophrenia, there is an emerging gap appearing in terms of health inequality which includes the issue of physical activity levels. That physical activity levels may also have important knock-on effects for things like bone health (see this post) and possibly exposure to sunshine and that all-important vitamin D (see this post) are also important considerations too.
To close, a song about walking by two brothers who are talking about walking an awfully long way. Oh and for those who were also wondering about the word 'haver', some background can be found here.
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[1] Tudor-Locke C. & Bassett DR Jnr. How many steps/day are enough? Sports Med. 2004: 34: 1-8.
[2] Must A. et al. Comparison of sedentary behaviors between children with autism spectrum disorders and typically developing children. Autism. 2013 Oct 10.
[3] Mazurek MO. & Wenstrup C. Television, video game and social media use among children with ASD and typically developing siblings. J Autism Dev Disord. 2013 Jun;43(6):1258-71.
[4] Engelhardt CR. et al. Media Use and Sleep Among Boys With Autism Spectrum Disorder, ADHD, or Typical Development. Pediatrics. November 2013.
[5] Bandini LG. et al. Comparison of physical activity between children with autism spectrum disorders and typically developing children. Autism. 2013 Jan;17(1):44-54.
[6] Oriel KN. et al. The effects of aerobic exercise on academic engagement in young children with autism spectrum disorder. Pediatr Phys Ther. 2011 Summer;23(2):187-93.
[7] García-Villamisar DA. & Dattilo J. Effects of a leisure programme on quality of life and stress of individuals with ASD. J Intellect Disabil Res. 2010 Jul;54(7):611-9.
[8] Petrus C. et al. Effects of exercise interventions on stereotypic behaviours in children with autism spectrum disorder. Physiother Can. 2008 Spring;60(2):134-45.
[9] Pitetti KH. et al. The efficacy of a 9-month treadmill walking program on the exercise capacity and weight reduction for adolescents with severe autism. J Autism Dev Disord. 2007 Jul;37(6):997-1006.
[10] Fragala-Pinkham MA. et al. Group swimming and aquatic exercise programme for children with autism spectrum disorders: a pilot study. Dev Neurorehabil. 2011;14(4):230-41.
[11] Fragala-Pinkham M. et al. Group aquatic aerobic exercise for children with disabilities. Dev Med Child Neurol. 2008 Nov;50(11):822-7.
[12] 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.
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Must A, Phillips SM, Curtin C, Anderson SE, Maslin M, Lividini K, & Bandini LG (2013). Comparison of sedentary behaviors between children with autism spectrum disorders and typically developing children. Autism : the international journal of research and practice PMID: 24113339
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| The Ministry... @ Wikipedia |
We are all seemingly bombarded these days with information mixed in with a healthy sprinkling of science suggesting that one needn't be pounding the streets for hours on end in order to get a little bit more healthy. It's all about making sure that we aren't too sedentary and perhaps enjoying a little more of the great outdoors even if at a leisurely pace.
With this in mind, I was very interested to read the paper by Avivia Must and colleagues [2] who upon comparing a small-ish group of children diagnosed with an autism spectrum condition (n=53) with typically developing peers (n=58), found that "children with autism spectrum disorder spent an hour more in sedentary behaviors on weekdays compared to typically developing children". Further Must et al also reported quite a bit of that increase in sedentary behaviour was apportioned to an increase in screen time (TV and computer) and "sedentary behaiour is linked to relative weight status" in the group of children with autism. Think screen time and autism and I think about the work of Micah Mazurek as exemplified by this paper [3] and more recently with the issue of sleep in mind [4].
Some more digging into the various research done on exercise and autism revealed some equally interesting findings. The same authorship group have looked at this issue before as per the article by Bandini and colleagues [5] who suggested based on the same spread of participants (autism, n=53, not-autism, n=58) "moderate and vigorous activity was similar in children with ASD (50.0 minutes/day and typically developing children 57.1 minutes/day)". That being said, the authors did report that children with autism participated in "fewer physical activities and for less time according to parental report" highlighting potential issues with the measurement schedule employed to examine activity levels.
These and other similar research on activity levels and autism perhaps represent the other side of the research coin in terms of the increasing interest in the use of technology to improve quality of life for those on the autism spectrum. The rise and rise of the use of tablet technology for example, whilst often a significant step forward for some on the autism spectrum, not necessarily being great news for levels of physical activity if replacing time that could be used on non-sedentary activities.
The question of whether physical activity might also have some added benefits outside of just physical health has also been looked at. Oriel and colleagues [6] reported that "aerobic exercise prior to classroom activities may improve academic responding in young children with autism spectrum disorder". I'm not for one minute suggesting that every classroom should be installing a treadmill so as to increase 'correct' responses to I assume, questions posed by the teacher. But as I've indicated on a previous post about stress (see here), physical exercise often goes so much further than just improving physical health and that applies to autism too [7]. Other research reviews whilst highlighting a lack of good quality evidence in this area, have nonetheless suggested that exercise participation might have a least some short-term bearing on the presentation of facets of autism also [8].
With all the mind, the question of what kind of activities might increase activity levels in cases of autism in childhood has similarly been examined in autism research circles.
Walking is often a good place to start when it comes to increasing activity levels. The paper by Pitetti and colleagues [9] reported that even for those at the more severe end of the autism spectrum, the implementation of a walking program may well have some important benefits. Correspondingly, I've heard a few people talk about young people and adults with autism (again towards the more severe end of the autism spectrum) who very much enjoy long (sometimes very long) walks in all weathers. One wonders whether they might know more than us about what makes them feel good?
Swimming is another option to consider as per the paper by Fragala-Pinkham and colleagues [10]. Granted their results weren't astounding in terms of fitness outcomes for some participants (although contrasted with previous work of theirs [11]) but one might suggest that anything which increases activity is worthwhile. That and the often life-saving skills that are gained by learning to swim. Indeed, Pan [12] reported on some other potentially important changes noted following implementation of a water exercise swimming program with a small group of children with autism.
And then there are other exercise options to consider. Horseback riding (see here) assuming no fear of such animals and something which has cropped up before on this blog, the various martial arts (see this post) might also be good ways of increasing activity levels and decreasing sedentary behaviours. I suppose it's all about finding something that the individual enjoys.
Recognising that a sedentary lifestyle is not really ideal for anyone, there are perhaps some important lessons to be learned about increasing activity levels among children and adults with autism. Physical activity is an important part of physical health, and as we've seen in relation to schizophrenia, there is an emerging gap appearing in terms of health inequality which includes the issue of physical activity levels. That physical activity levels may also have important knock-on effects for things like bone health (see this post) and possibly exposure to sunshine and that all-important vitamin D (see this post) are also important considerations too.
To close, a song about walking by two brothers who are talking about walking an awfully long way. Oh and for those who were also wondering about the word 'haver', some background can be found here.
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[1] Tudor-Locke C. & Bassett DR Jnr. How many steps/day are enough? Sports Med. 2004: 34: 1-8.
[2] Must A. et al. Comparison of sedentary behaviors between children with autism spectrum disorders and typically developing children. Autism. 2013 Oct 10.
[3] Mazurek MO. & Wenstrup C. Television, video game and social media use among children with ASD and typically developing siblings. J Autism Dev Disord. 2013 Jun;43(6):1258-71.
[4] Engelhardt CR. et al. Media Use and Sleep Among Boys With Autism Spectrum Disorder, ADHD, or Typical Development. Pediatrics. November 2013.
[5] Bandini LG. et al. Comparison of physical activity between children with autism spectrum disorders and typically developing children. Autism. 2013 Jan;17(1):44-54.
[6] Oriel KN. et al. The effects of aerobic exercise on academic engagement in young children with autism spectrum disorder. Pediatr Phys Ther. 2011 Summer;23(2):187-93.
[7] García-Villamisar DA. & Dattilo J. Effects of a leisure programme on quality of life and stress of individuals with ASD. J Intellect Disabil Res. 2010 Jul;54(7):611-9.
[8] Petrus C. et al. Effects of exercise interventions on stereotypic behaviours in children with autism spectrum disorder. Physiother Can. 2008 Spring;60(2):134-45.
[9] Pitetti KH. et al. The efficacy of a 9-month treadmill walking program on the exercise capacity and weight reduction for adolescents with severe autism. J Autism Dev Disord. 2007 Jul;37(6):997-1006.
[10] Fragala-Pinkham MA. et al. Group swimming and aquatic exercise programme for children with autism spectrum disorders: a pilot study. Dev Neurorehabil. 2011;14(4):230-41.
[11] Fragala-Pinkham M. et al. Group aquatic aerobic exercise for children with disabilities. Dev Med Child Neurol. 2008 Nov;50(11):822-7.
[12] 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.
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Must A, Phillips SM, Curtin C, Anderson SE, Maslin M, Lividini K, & Bandini LG (2013). Comparison of sedentary behaviors between children with autism spectrum disorders and typically developing children. Autism : the international journal of research and practice PMID: 24113339
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