On unintentional drowning deaths in children with autism

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

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

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

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

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

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

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

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

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

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

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

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Challenging behaviour and autism: how do parents manage it?

I'm not going to dwell too much on the findings reported by Elizabeth O’Nions and colleagues [1] discussing some of the ways-and-means used "to manage problem behaviour" in the context of autism, but I did want to bring it to your attention.

It's an important summary because (a) it highlights how a diagnosis of autism or autism spectrum disorder (ASD) does seem to increase the risk of various 'challenging behaviours' appearing above and beyond what would typically be expected (see here), (b) it illustrates how said behaviours have an important impact both on the person themselves and significant others around them (see here), and (c) it details 'what might help' in terms of parents or significant others managing such behaviour(s) as well as providing a road map for further study and potentially, further guidance.

The O'Nions paper is open-access so you can read for yourself what the findings were. The main points as I saw them were:

• Challenging behaviours covers a lot of ground.
• Said behaviours can and do affect quality of life for all concerned.
• Various strategies are employed by parents to cope with such behaviours including "accommodating the child... modifying the environment... providing structure, routine and occupation... managing non-compliance with everyday tasks and activities... [and] managing distress."
• Strategies for 'dealing' with such behaviour(s) often take into account their effects not only on the person/child concerned but also the family unit.

What's missing from this review? Well, accepting that the focus was "to identify how parents and caregivers spontaneously manage problem behaviour in ASD" I found the O'Nions paper to be rather light on anything not related to behaviour and/or psychology. Take for example, the growing realisation that challenging behaviour(s) seem to show some connection to sleep patterns in the context of autism [2] and what that could mean for intervention(s) to manage sleep issues for example (see here). Similarly, the idea that challenging behaviours can, on some occasions, seem to be linked to the experience of pain (see here) and/or fatigue (see here) is perhaps something else important to reiterate, as part of a suite of potential factors to consider (see here). I might also add that a certain type of pain/discomfort (e.g. gastrointestinal) together with sleep issues in the context of autism have been a source of some joint inquiry (see here). There is also a case for further research looking at targeted pharmacotherapy in the context of some challenging behaviours too (see here) with appropriate concerns and caveats noted.

There is another aspect raised by the O'Nions review that also needs to be mentioned: "This analysis shows that many of the strategies used by parents of children with ASD are specifically targeted to manage particular vulnerabilities (e.g., sensory sensitivities, rigidity, insistence on sameness), or accomplish particular behavioural goals, and may be relatively unique to this population." I stress of course, the idea that the core features of autism / ASD seem to be 'targets' of intervention in this area illustrating the link between core behaviours and challenging behaviours. Although I've made quite a big thing on this blog about how 'comorbidity' appearing alongside autism is probably not just comorbidity (see here), I'm taking a slightly opposite view on this occasion, and suggesting that one also needs to be mindful that issues such as anxiety and depression may very well exert an effect on the presentation of challenging behaviour(s) and perhaps need to be looked at separately?

And whilst we're on the topic of challenging behaviours in the context of autism, the review of social outcomes for a sample of adults with autism published by Megan Farley and colleagues [3] provides some further interesting discussions on this topic. Specifically that: "most participants were only aggressive in response to frustrating situations or when experiencing problems with medical conditions." There's [seemingly] always a reason...

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[1] O'Nions E. et al. How do Parents Manage Irritability, Challenging Behaviour, Non-Compliance and Anxiety in Children with Autism Spectrum Disorders? A Meta-Synthesis. J Autism Dev Disord. 2017. Dec 8.

[2] Cohen S. et al. Sleep patterns predictive of daytime challenging behavior in individuals with low-functioning autism. Autism Res. 2017 Dec 1.

[3] Farley M. et al. Mid-life social outcomes for a population-based sample of adults with ASD. Autism Res. 2017 Dec 20.

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"illness course subtypes can account for significant differences in the experiences of patients with CFS and ME"

The quote titling this post - "illness course subtypes can account for significant differences in the experiences of patients with CFS [Chronic Fatigue Syndrome] and ME [Myalgic Encephalomlyelitis]" - comes from the findings reported by Jamie Stoothoff and colleagues [1] (open-access available here).

Including one Leonard Jason on the authorship list, someone who has quite a pronounced peer-reviewed research history when it comes to ME/CFS (see here and see here for examples), researchers looked at over 500 people from various research cohorts who were "at least 18 years of age with a current diagnosis of CFS or ME." Participants from one of the cohorts, we are told, included those "who self-identified as having a CFS or ME diagnosis" so one perhaps has to be little careful when interpreting results; especially given prior 'mix-ups' between notions of  'chronic fatigue' and a diagnosis of CFS (see here)...

Participants completed a few assessment instruments including the Medical Outcomes Study 36-item short-form health survey (SF-36) and the DePaul Symptom Questionnaire (DSQ), providing a snapshot in relation to "current physical and mental functioning" and "CFS-related symptomatology." Researchers also calculated "energy quotients" which, although sounding like something a bit 'new age' actually involved asking participants to "rate their available and expended energy yesterday and last week" based on items included in the DSQ. The main aim was to explore the 'feasibility' of "classifying differing experiences of CFS and ME symptomology."

Results: a few 'generalisations' were derived from the collected results, which translated into 'illness course sub-types' such as: "Fluctuating (59.7%), with 15.9% Constantly Getting Worse, 14.1% Persisting, 8.5% Relapsing and Remitting, and 1.9% Constantly Getting Better." Authors also reported that "no significant relationship was found between illness course groups and gender, race, ethnicity, marital status, education, or work status."

Outside of other pretty obvious results - "The Constantly Getting Worse group generally reported higher levels of symptom severity and frequency when compared to the other groups, while the Constantly Improving group reported lower levels of symptom severity and frequency compared to the other groups" - authors also reported findings in relation to those energy quotients previously mentioned. So: "the Constantly Getting Worse group reported overextending their personal energy envelopes to significantly higher degree compared to the average patient" with the need for a lot more research in this area.

I know some people might be shrugging their shoulders about these results with 'so what' sentiments but I'm not one of them. The reason: quite a lot of things in relation to ME/CFS have been taken 'as read' down the years. Be that something like discussions on what recovery looks like in relation to ME/CFS (see here) through to questions about whether ME/CFS in the UK for example, is the same as ME/CFS in other parts of the world (see here), [previous] research seems to have 'skipped' quite a few important steps along the way; only now being corrected. The ideas derived from this latest research on how ME/CFS is not necessarily a 'static condition' in terms of symptom profiles (albeit based on a snapshot) adds to that basic research on the label(s).

With the requirement for quite a bit more replicative work needed, I also wondered whether this research from Stoothoff et al might overlap with other, more biologically-orientated results too. So, those talking about typical/atypical ME/CFS presentation impacting on immune system markers (see here) or even the effects of duration/staging of the condition(s) when it comes to biochemistry (see here) might represent important inclusions in further drafts of work on illness subtypes?

Oh, and whilst on the topic of ME/CFS, the recent findings by Nilsson and colleagues [2] inform us that use of a monoaminergic stabiliser - (-)-OSU6162 - previously thought to show "promise for treating a variety of neuropsychiatric disorders such as Huntington’s disease, schizophrenia, and mental fatigue following stroke or head trauma" probably isn't going to be great for ME/CFS. Yet more evidence for the idea that mental fatigue, accompanying physical fatigue and PEM as a characteristic feature of ME/CFS, is probably not just some sort of stand-alone 'psychiatric' manifestation...

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[1] Stoothoff J. et al. Subtyping Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) By Course of Illness. J Biosens Biomark Diagn. 2017;2(1).

[2] Nilsson MKL. et al. A randomised controlled trial of the monoaminergic stabiliser (-)-OSU6162 in treatment of myalgic encephalomyelitis/chronic fatigue syndrome. Acta Neuropsychiatr. 2017 Dec 7:1-10.

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"Minor physical anomalies" and autism: hypermobility very much included

'Minor physical anomalies' (MPAs) are defined as "subtle, abnormal morphological features, such as deviations in morphology of the head, eyes, ears, mouth, hands, and feet." I appreciate that such a term is probably not going to everyone's cup of tea, but given the embryological links between organs such as the brain and skin, it's assumed that "MPAs may mirror altered brain development."

That was the starting point for the study results published by Lynnea Myers and colleagues [1] looking for the presence of MPAs in a cohort of over 110 twins, around half of whom had received a concordant or discordant neurodevelopmental disorder diagnosis such as "intellectual disability (ID), communication disorders, autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), specific learning disorders, and motor disorders." Alongside various behavioural and diagnostic assessments, researchers also used a special MPA checklist "containing a total of 179 anomalies for males (24 body regions) and 171 for females (23 body regions)" with their cohort. This checklist also included various other 'issues' that are "commonly assessed for in physical exams."

Various results were produced bearing in mind the quite complicated participant mix included for study (i.e. presence or not of a neurodevelopmental disorder, concordance among twins, zygosity, specific neurodevelopmental diagnosis, etc). Autism was the only neurodevelopmental diagnosis that was "significantly associated with the extent of MPAs." If twins were concordant for autism or autism spectrum disorder (ASD), researchers observed that they "had descriptively the highest median (Md) number of MPAs." Where twins were discordant - one had autism, the other not - researchers still observed MPAs, albeit to a slightly lesser degree (number). Further: "The most common MPAs in participants with ASD included overweight (39%), hypermobility (36%), pes planus (29%), straight eyebrows (29%), vision impairment (25%; 29% of these with corrective lenses), arachnodactyly/long toes (25%), long eyelashes (21%), and microtia (21%)."

Putting to one side the important findings that almost 40% of those with ASD were described as overweight (see here) or that vision issues were present in a quarter (see here), I was drawn to the suggestion that quite a percentage of those with autism (36%) were described as having hypermobility. Hypermobility, where joints are more flexible than usual, in the context of autism is something of an interest of mine (see here and see here). Not least because it is an area of the autism research landscape crying out for a lot more investigation, both as part of a wider 'psychiatric picture' (see here) and also in the 'ESSENCE' context that autism rarely exists in some sort of diagnostic vacuum (see here).

Minus any sweeping generalisations, there are a few potentially important implications either linked to or arising from hypermobility in the context of autism. Poor balance and/or coordination is one possible outcome from hypermobility that would perhaps tie into what has been discussed in the autism research literature for years and years now [2] (even Kanner mentioned it). The observation that functional gastrointestinal (GI) issues such as constipation and diarrhoea also seem to be over-represented in relation to hypermobility [3] also potentially accords with findings pertinent to quite a lot of autism (see here) (bearing in mind that I'm not saying that all bowel issues noted in autism are necessarily hypermobility-connected). If however one was to stretch things further, one might be looking at something like joint hypermobility in the context of connective tissue disorder and what that could mean for something like intestinal permeability issues associated with 'some' autism (see here). I know this is speculative, but at least it provides a research plan of action to include in future investigations in this area.

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[1] Myers L. et al. Minor physical anomalies in neurodevelopmental disorders: a twin study. Child and Adolescent Psychiatry and Mental Health. 2017; 11: 57.

[2] Cassidy S. et al. Dyspraxia and autistic traits in adults with and without autism spectrum conditions. Mol Autism. 2016 Nov 25;7:48.

[3] Fikree A. et al. Functional gastrointestinal disorders are associated with the joint hypermobility syndrome in secondary care: a case-control study. Neurogastroenterol Motil. 2015 Apr;27(4):569-79.

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On the recent report suggesting that US autism rates "appear to be stabilizing"

The research letter by Guifeng Xu and colleagues [1] is making some New Year's headlines following their finding that: "In a large, nationwide population based study, the estimated ASD [autism spectrum disorder] prevalence was 2.41% among US children and adolescents in 2014-2016, with no statistically significant increase over the 3 years."

Based on data derived from the National Health Interview Survey (NHIS), researchers have kinda repeated what was reported in a recent NCHS data brief [2] that provided some blogging fodder here a few weeks ago (see here). On that occasion as this, the data reported an increasing percentage of families positively responding to the question: "Has a doctor or health professional ever told you that [sample child] had Autism, Asperger’s disorder, pervasive developmental disorder, or autism spectrum disorder?" year on year, but nothing to say that the percentage increase is statistically significant.

Unlike the Xu data, the previous data brief by Zablotsky and colleagues [2] also asked some questions about diagnoses 'around the edges of autism'  such as 'other developmental delay' alongside a composite measure called 'developmental disability' that included ASD, intellectual disability and other developmental delay. The stats for that composite measures were deemed statistically significant in terms of the increase in percentages of children/young adults being diagnosed year on year.

Whilst there may be some optimism that the rates of autism/ASD might be 'stabilising' based on the NHIS research format, I'd like to see a lot more data before anyone calls an end to the quite phenomenal increase in the numbers of children/young adults being diagnosed over the past few decades. I believe we should be due some updated CDC figures later this year (2018) on the basis of other data reported on a once-every-2-years basis with autism in mind (see here). And hopefully, the moves to "estimate ASD case status on the basis of both DSM-5 and DSM-IV-TR" in the next CDC figures, should provide some additional talking points too (see here)...

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[1] Xu G. et al. Prevalence of Autism Spectrum Disorder Among US Children and Adolescents, 2014-2016. JAMA. 2018; 319: 81-82.

[2] Zablotsky B. et al. Estimated prevalence of children with diagnosed developmental disabilities in the United States, 2014–2016. NCHS Data Brief, no 291. Hyattsville, MD: National Center for Health Statistics. 2017

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"Social cognitive deficits are present in a wide range of clinical conditions"

Happy New Year!

Welcome to Questioning Answers 2018-style. Let's continue...

Today I'm bringing to your attention the findings reported by Jack Cotter and colleagues [1] who concluded that: "social cognitive deficits appear to be a core cognitive phenotype of many clinical conditions."

Social cognitive issues defined as "mental operations that underlie social interactions" and "includes a range of cognitive processes that help individuals to understand how others think and feel" are something not unknown to the core subject of this blog: autism. Indeed, Cotter et al mention how the "most heavily researched aspects of social cognition are emotion recognition and theory of mind (ToM)." Right or wrong, ToM in particular, has had quite a significant influence on autism research and thought down the years (see here).

Cotter and colleagues "sought to collate existing meta-analytic data on social cognitive performance among individuals with a range of clinical conditions" on the basis that whilst the label of autism has received the lion's share of research interest, social cognitive issues perhaps span a far wider range of labels/conditions. They scoured the peer-reviewed literature and identified some 31 meta-analyses published that "examined performance on facial emotion recognition (24 papers) and/or ToM tasks (24 papers) among 30 different clinical populations relative to controls." The sorts of clinical populations identified ranged from psychiatric disorders such as psychosis and schizophrenia, to neurological disorders such as epilepsy and traumatic brain injury to developmental disorders such as attention-deficit hyperactivity disorder (ADHD) and intellectual (learning) disability.

Their conclusions: "Though these results do not provide directly comparable estimates between clinical conditions, they provide a robust indication that social cognitive deficits appear to be a core cognitive phenotype of many developmental, neurological and psychiatric disorders." The authors go on to discuss how, on the basis of their findings, social cognitive issues (impairment) might be "a general biomarker indicative of neurological abnormality" more generally; also, in some contexts, providing information on the 'progression' of a particular condition.

In these days of ever-blurring labels and conditions, where comorbidity is proving to be the rule rather than the exception [2] (see here also), there is common sense in the Cotter findings. Sense, insofar as the idea that no one diagnostic label has generally got a monopoly on a particular behaviour and/or symptom and that social cognitive issues might be 'core' to quite a few conditions. A greater appreciation of such an idea could potentially impact, in many different ways, on what we think about many seemingly different psychiatric, developmental and neurological labels. A few stand-out points include: (a) a reiteration of how nonsensical the term 'neurotypical' is from a social cognitive perspective when describing 'not-autism' (see here); (b) a further illustration of the value of a professional assessment as and when something like autism is suspected, rather than just a reliance on brief 'are you autistic?' questionnaires that tend to rely heavily on social cognition as a 'symptom' (see here); and (c) investigation into whether or not important biological 'issues' thought to accompany social cognitive 'issues' could also be quite wide-ranging among many conditions/labels (see here for some discussion on the concept of inflammation for example).

And since we're on the topic of grand, sweeping psychological concepts spanning different conditions, how about the idea that executive function issues might also cross labels [3] too...

Stay tuned for more in 2018.

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[1] Cotter J. et al. Social cognitive dysfunction as a clinical marker: A systematic review of meta-analyses across 30 clinical conditions. Neuroscience & Biobehavioral Reviews. 2018; 84: 92-99.

[2] Posserud M. et al. Autism traits: The importance of “co-morbid” problems for impairment and contact with services. Data from the Bergen Child Study. Research in Developmental Disabilities. 2018; 72: 275-283.

[3] Carter Leno V. et al. Testing the specificity of executive functioning impairments in adolescents with ADHD, ODD/CD and ASD. Eur Child Adolesc Psychiatry. 2017 Dec 9.

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