"Rates of death are higher for autistic individuals compared to the general population"

It's world autism awareness day today (2 April). The theme this year (2019), according to the United Nations, is "Assistive Technologies, Active Participation", something rather timely given the recent realisation that quite a few people diagnosed with autism are not properly represented [1] in various fields. Indeed, it continues a theme on the under-represented and under-studied populations within the autism spectrum being highlighted today of all days (see here)...

To mark this years autism awareness day, I'm turning to a topic that is probably about as important as it gets with regards to autism or any label: premature death. Specifically, highlighting how premature premature death can actually be when autism is diagnosed. I appreciate that this is not great PR for autism. But it's real-life for too many; and needs to be talked about as much as possible so people sit up and (hopefully) do something about it...

So...

The quote heading up this post - "Rates of death are higher for autistic individuals compared to the general population" - taken from the findings reported by Ye In (Jane) Hwang and colleagues [2] is perhaps not altogether accurate. A more precise meaning is required: as a group, those diagnosed with autism or autism spectrum disorder (ASD) are at some elevated risk for a premature (untimely) death than the non-autistic population (see here). Not exactly great dinner party conversation but vitally important nonetheless.

This is a topic that has cropped up time and time again in the peer-reviewed research literature and beyond (see here and see here). The grim trend crosses geographical boundaries and seems to cover the entirety of the autism spectrum. This time around New South Wales in Australia provided the source data with the aim "to report the rates and risk factors for mortality and cause of death in individuals on the autism spectrum (n = 35,929 age range 5-64) with and without concurrent intellectual disability (ID)."

The results: "Mortality rates for those on the autism spectrum were 2.06 times that of the general population." In line with other data (see here), those who also presented with intellectual (learning) disability alongside autism were at a higher risk of death. Epilepsy is also reported as being an important issue too (see here). A few other details are highlighted in the Hwang paper including the observations that "injury and poisoning" were some of the top-ranked causes of death as per other data (see here and see here).

What's more to say on this topic? Another call to action (see here)? Some more big news headlines (see here)? Another 'long-term plan' (see here)? All well-and-good, but what's actually being done to tackle such frightening statistics here and now and actually improve and extend lives in the here and now? What's currently helping autistic people to 'age well' [3]? And just in case you're of the inclination that epilepsy and intellectual (learning) disability are some how not a 'core' part of some autism, you're probably wrong in many cases (see here and see here)...

If the Hwang and other data aren't enough to satisfy you on this topic, another research paper with another (similar) set of grim findings has also recently been published [4]. Faced with such data, discussions about a puppet depicting one face of autism (see here) for example, don't seem all that important do they? Indeed, if half as much time was dedicated to highlighting the mortality stats associated with autism and making sure this makes headlines - over a 20 year period "6.4% of individuals died at an average age of 39 years" - may be more would be done to tackle them, including providing "adequate access to health care for individuals with autism spectrum disorder."

Food for thought, and hopefully important fuel for action...

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[1] Russell G. et al. Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis. Molecular Autism. 2019; 10: 9.

[2] Hwang YIJ. et al. Mortality and cause of death of Australians on the autism spectrum. Autism Res. 2019 Feb 25.

[3] Hwang YI. et al. Aging Well on the Autism Spectrum: An Examination of the Dominant Model of Successful Aging. J Autism Dev Disord. 2018 May 2.

[4] Smith DaWalt L. et al. Mortality in individuals with autism spectrum disorder: Predictors over a 20-year period. Autism. 2019. Feb 28.

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Risk of poisoning in ADHD: meta-analysed

There was something inevitable about the results published by Maite Ruiz-Goikoetxea and colleagues [1] looking at the currently amassed scientific data "quantifying the risk of poisoning in children/adolescents with ADHD [attention-deficit hyperactivity disorder]."

Inevitable, because the results of their meta-analysis observing that "ADHD is associated with a significantly higher risk of poisoning" kinda tallies with other enhanced risk(s) in relation to general injury coinciding with this diagnosis, mentioned by the same authorship group (see here).

Poisoning - "defined by the World Health Organization as “an injury that results from being exposed to an exogenous substance that causes cellular injury or death”" - covers quite a bit of ground. The authors headed into this particular topic on the basis of their previous research foray (which I blogged about) on meta-analysing injury risk in the context of ADHD [2]. They started out with the premise that "a plausible hypothesis is that ADHD symptoms (inattention, hyperactivity and impulsivity) could lead to a similar increase in the risk of poisoning."

Nine studies including some 85,000 children and adolescents diagnosed with ADHD and 1.4 million not-ADHD controls, were included in their meta-analysis. Diagnosis of ADHD were garnered from various sources but most commonly 'administrative coding' on the basis of diagnosis and/or medication being dispensed for ADHD. Exposure to a poisoning event was also analysed; predominantly based on the use of registry data and predominantly utilising the ICD classification of poisoning.

"Overall, poisoning cases were uncommon" is an important point made by the authors; indicating that the absolute numbers of poisoning cases in ADHD and not-ADHD were actually low. So: "The median number per study of poisoned individuals that suffered from ADHD was 14..., whereas the median number per study of poisoned individuals who did not suffer from ADHD was 29." Bearing in mind there were more not-ADHD participants than diagnosed ADHD participants cumulatively reviewed by Ruiz-Goikoetxea et al, the calculated prevalence rates (per 1000) of poisoning "ranged between 3.5 and 60 (median 16) in children and adolescents with ADHD and between 0.8 and 37.3 (median 4.8) in children and adolescents without ADHD."

Still, the calculated risk - relative risk - was elevated in relation to poisoning events in those diagnosed with ADHD to the tune of something like them being three times more likely to suffer a poisoning event. Authors also noted that: "the relative risk of poisoning in individuals with ADHD compared to individuals without it was statistically higher than the overall relative risk of physical injuries" thus hat-tipping their previous research efforts.

There are some other details included in the Ruiz-Goikoetxea that are noteworthy insofar as age-effects - "poisoning incidence has two peaks across the child life span" - and how "the poly-pharmacy status in many ADHD patients could increase the likelihood of an accidental poisoning." But the bottom line is that, yet again, a diagnosis of ADHD seems to put someone as some significantly heightened risk of injury, and we should be doing everything we can to minimise any additional risks to those diagnosed.

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[1] Ruiz-Goikoetxea M. et al. Risk of poisoning in children and adolescents with ADHD: a systematic review and meta-analysis. Sci Rep. 2018 May 15;8(1):7584.

[2] Ruiz-Goikoetxea M. et al. Risk of unintentional injuries in children and adolescents with ADHD and the impact of ADHD medications: a systematic review and meta-analysis. Neuroscience & Biobehavioral Reviews. 2018; 84: 63-71.

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ADHD and non-suicidal self-injury (NSSI)

I've covered the growing literature observing a link between a diagnosis of attention-deficit hyperactivity disorder (ADHD) and risk of unintentional injury a few times on this blog (see here and see here). The quite consistent picture emerging from that body of peer-reviewed research is that yes, a diagnosis of ADHD does seem to increase the risk of injury for whatever reason(s). Further, that pharmacotherapy utilising some of the various medicines indicated for ADHD, seems to have something of a 'reducing' effect on that elevated injury risk (see here).

Today I'm extending that ADHD-injury risk work to include the findings reported by Judit Balázs and colleagues [1] who concluded that: "ADHD symptoms are associated with an increased risk of NSSI [non-suicidal self-injury] in adolescents." Further that: "the symptoms of affective disorders and alcohol abuse/dependence psychotic symptoms" seem to be important 'mediators' of that risk of NSSI in the context of ADHD symptoms.

Based on the examination of adolescents who "were inpatients in the Vadaskert Child and Adolescent Psychiatric Hospital and Outpatient Clinic, Budapest, Hungary between 25.02.2015 and 09.05.2016", researchers reported that some 50 adolescents met the full criteria for ADHD and a further 70-odd "showed symptoms of ADHD at the subthreshold level." They employed the "Hungarian version of the modified Mini International Neuropsychiatric Interview Kid" to assess for various psychiatric symptoms, alongside the Deliberate Self-Harm Inventory (DSHI) to provide details on self-injury and some further questioning on suicidality. The aim was to investigate rates of NSSI in their cohort but also "how the symptoms of comorbid psychiatric conditions influence this [relationship], and whether there is a difference between girls and boys at this age."

Results: alongside the finding that at the very least, ADHD or ADHD symptoms are not protective against non-suicidal self-injury (NSSI), authors also observed that "people with ADHD have a higher risk than those without of developing comorbid psychiatric problems, both externalizing and internalizing ones" and "there is no direct association between the symptoms of ADHD and the prevalence of NSSI in a clinical sample of adolescents in any sex." On that last point, authors further opine that: "Comorbidities fully mediate the association between these conditions." In other words, clinicians should be screening for various psychiatric comorbidities - major depressive episode, dysthymic disorder, hypo/manic episode, psychotic disorders, substance-related dependence/abuse - and treating said comorbidities to potentially offset the risk of NSSI appearing alongside ADHD or subclinical ADHD.

In these days of ESSENCE - Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations - where the rule seems to be that various labels do not appear in some sort of diagnostic vacuum (see here for example), the Balázs findings fit well. The implication being that before grand associations are made on the basis of one variable = one condition/label/diagnosis (see here for example), one should perhaps consider a wider clinical picture. Indeed, to further extend the Balázs findings talking about NSSI, and based on the idea that autism and ADHD seem to be an important clinical combination (see here), I would perhaps encourage a greater depth of screening in future research (see here). That also might apply to the delicate issue of suicidality too (see here)...

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[1] Balázs J. et al. Attention-deficit hyperactivity disorder and nonsuicidal self-injury in a clinical sample of adolescents: the role of comorbidities and gender. BMC Psychiatry. 2018; 18:34.

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ADHD and risk of injuries meta-analysed (again)

"ADHD [attention-deficit hyperactivity disorder] is significantly associated with an increased risk of unintentional injuries and ADHD medications have a protective effect, at least in the short term, as indicated by self-controlled studies."

So concluded the "systematic review with meta-analyses" conducted by Maite Ruiz-Goikoetxea and colleagues [1] pertinent to "the association between ADHD and risk of unintentional physical injuries in children/adolescents." The '(again)' mentioned in the title of this post references the findings reported by Amiri and colleagues [2] that were discussed earlier this year on this blog (see here).

Ruiz-Goikoetxea et al do make mention of the Amiri meta-analysis and how post-2014 (the point at which the Amiri systematic review and meta-analysis halted) "several methodological sound studies have been published." They also mention how the Amiri analysis "did not control for gender effects, which are a crucial confounder due to the association of both risk of UPIs [unintentional physical injuries] and ADHD to male gender" nor how they looked at the impact of medications for ADHD on the risk(s) of such injuries.

Splitting their analyses in two (a) a risk analysis looking at the risk of UPIs with ADHD in mind and (b) a medication analysis looking at the role (or not) of medication in terms of UPIs in the context of ADHD, authors report results based on their already published protocols [3]. They reported on "odds ratios (ORs) or hazard ratios (HRs) estimating the association between ADHD and injuries" and cumulatively included participant numbers in the tens of thousands.

Results: "a significantly higher risk of injuries in ADHD compared to children or adolescents without ADHD" was observed. Nothing particularly novel there. Also, based on the finding that: "Methylphenidate was the most frequent drug among children and adolescents with ADHD", researchers reported on "a significant protective effect of the medication" on injury risk. The size of the risk reduction for UPI when medication was used was estimated at about 10%.

Once again, I can't argue with the associations made in terms of how a diagnosis of ADHD does 'up' the risk of physical injury and how medication might be one option out of several to reduce the risk of UPIs in the context of ADHD. Added to other work talking about how medication might also positively affect specific risk of motor vehicle accidents in the context of adult ADHD (see here) for example, it's becoming clearer that intervention helps. I appreciate that there may be some consumer resistance to the idea of 'medicating children' but the data so far on the cost-benefit profile of something like methylphenidate for ADHD is pretty favourable (see here). Certainly, one has to be careful about making too many negative sweeping statements about such medication (see here for example) just for the sake of it.

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[1] Ruiz-Goikoetxea M. et al. Risk of unintentional injuries in children and adolescents with ADHD and the impact of ADHD medications: a systematic review and meta-analysis. Neuroscience & Biobehavioral Reviews. 2017. Nov 21.

[2] Amiri S. et al. Attention deficit/hyperactivity disorder and risk of injuries: a systematic review and meta-analysis. J Inj Violence Res. 2017 Jun 1;9(2).

[3] Ruiz-Goikoetxea M. et al. Risk of unintentional injuries in children and adolescents with ADHD and the impact of ADHD medications: protocol for a systematic review and meta-analysis. BMJ Open. 2017 Sep 25;7(9):e018027.

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ADHD and risk of injuries meta-analysed

I have already covered the growing peer-reviewed research base looking at the diagnosis of attention-deficit hyperactivity disorder (ADHD) and risk of injuries on this blog before (twice in fact, see here and see here).

The results of the systematic review and meta-analysis by Shahrokh Amiri and colleagues [1] (open-access hopefully available here) therefore come as little surprise: "Those with ADHD are nearly two times more likely to be injured" and necessitates only a brief blogging entry today.

Based on cumulative results - "35 studies were selected for quantitative analysis" - drawn from the peer-reviewed science literature between 2000 and 2014, something of a 'strong' association was determined between ADHD and risk of injuries.

The authors talk about how facets of ADHD might more readily predispose someone to a greater risk of injury as things like risk-taking behaviour(s) "a well-known predictor in road traffic injuries" provide an important connection, also complemented by other behaviours typically associated with ADHD. All-in-all the Amiri results again suggest that yet again, much more clinical inspection is required to (a) inform those diagnosed with ADHD about their enhanced risk, and (b) perhaps reduce the signs/symptoms and/or effects of ADHD so to modify any excess injury risk. Common sense it seems.

To close, Adam West sings...

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[1] Amiri S. et al. Attention deficit/hyperactivity disorder and risk of injuries: a systematic review and meta-analysis. J Inj Violence Res. 2017 Jun 1;9(2).

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Amiri S, Sadeghi-Bazargani H, Nazari S, Ranjbar F, & Abdi S (2017). Attention deficit/hyperactivity disorder and risk of injuries: a systematic review and meta-analysis. Journal of injury & violence research, 9 (2) PMID: 28554188

Injury risk and ADHD: part 2

Consider this short post a sort of follow-on to a previous entry on this blog concerning the elevated risk of injury following a diagnosis of attention-deficit hyperactivity disorder (ADHD). The paper in question today is that by Wu-Chien Chien and colleagues [1] who yet again [2], brought the quite significant scientific weight of the "National Health Insurance Research Database in Taiwan" to bear on this topic.

In this latest paper, Chien et al relied on data from a 'subset' of the main insurance research database and found some not unexpected things: "The patients with ADHD had a 143% increased risk of overall injuries than the controls after considering all the confounding factors" and "the use of methylphenidate was associated with a 22.6% decrease in the risk of injuries in the patients with ADHD."

What's more to say? Well, yet again risk of adverse issues *correlating* with a diagnosis of ADHD comes to the forefront (see here for another example). Yet again the idea that 'tackling' ADHD is a worthy goal (for many reasons) if not only to mitigate such elevated risks being presented, bearing in mind that medication "approved solely for ADHD treatment" is not some sort of magic bullet [3]. There are also other potentially important intervention options to look at (see here for example). I'm minded at this point to also bring in the recent findings reported by Borschuk and colleagues [4] talking about how comorbid asthma accompanying ADHD (yes, there is a surprisingly strong relationship between the two diagnoses) might play a role in the expression of ADHD and onwards provide some 'interesting' directions when it comes to tackling ADHD and it's elevated risk for various adverse outcomes...

To close, appreciating a talent...

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[1] Chien WC. et al. The risk of injury in adults with attention-deficit hyperactivity disorder: A nationwide, matched-cohort, population-based study in Taiwan. Res Dev Disabil. 2017 Apr 27;65:57-73.

[2] Kang JH. et al. Attention-deficit/hyperactivity disorder increased the risk of injury: a population-based follow-up study. Acta Paediatr. 2013 Jun;102(6):640-3.

[3] Fleming M. et al. Educational and Health Outcomes of Children Treated for Attention-Deficit/Hyperactivity Disorder. JAMA Pediatr. 2017. May 1.

[4] Borschuk AP. et al. The influence of comorbid asthma on the severity of symptoms in children with attention-deficit hyperactivity disorder. J Asthma. 2017 May 1:1-7.

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Chien WC, Chung CH, Lin FH, Yeh CB, Huang SY, Lu RB, Chang HA, Kao YC, Chiang WS, Chou YC, Tsao CH, Wu YF, & Tzeng NS (2017). The risk of injury in adults with attention-deficit hyperactivity disorder: A nationwide, matched-cohort, population-based study in Taiwan. Research in developmental disabilities, 65, 57-73 PMID: 28458048

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

Injury risk and ADHD

"The results indicate that there is an elevated injury risk among Swedish schoolchildren with ADHD [attention-deficit hyperactivity disorder] but not for children with ASD [autism spectrum disorder]."

So went the findings reported by Carl Bonander and colleagues [1] providing yet more important data on how a diagnosis of ADHD might be something that confers quite a bit of additional risk for all-manner of different negative outcomes.

I've hinted at this important topic before as per some discussion a few years back on how road crossing behaviour might be 'affected' by a diagnosis of ADHD (see here). This time around Swedish researchers compared the risk of injury for those diagnosed with autism vs. risk of injury for those diagnosed with ADHD based on school nurse collected- and school-based data (survey A and B respectively). "After adjusting for confounders, ADHD was associated with a 65% increased risk of injury... in Survey A, and a 57% increased risk of injury... in Survey B" relative to data derived from "unaffected controls."

A quick look through the other peer-reviewed material on this topic reveals the extent to which a diagnosis of ADHD might increase the risk of various injuries. Take the paper by Silva and colleagues [2] who noted that in "young children who are subsequently diagnosed with attention deficit hyperactivity disorder (ADHD)" there was an increased risk of hospitalisation for all manner of different things: "head injuries, burns, poisons, all other injuries." Other studies have reported similar findings [3] including that relying on 'big data' from the big data capital that is Taiwan [4] (see here for more chatter on Taiwan).

Whilst no-one is suggesting that every visit to accident and emergency (the emergency room) is somehow the product of ADHD, there are some potentially important lessons to learn from such collected data. Timely diagnosis and appropriate management of ADHD symptoms when they affect quality of life are two points raised, bearing in mind 'management' might include several strategies (see here and see here and see here). Where also hospitals or other medical professionals are presented with children or young people who are 'regular visitors', one might also look to the possibility of preferential screening for something like ADHD too as part of additional enquiries. I might add that whilst Bonander and colleagues looked at ADHD vs. autism when it comes to injury risk, one must not forget that ADHD and autism occurring together is not an uncommon finding (see here) and accident and emergency is not necessarily an unfamiliar place to some of those on the autism spectrum (see here). There is more to do in this important area of research.

Finally, I'm also minded to reiterate that hosptial admissions for certain chronic somatic issues might also flag up preferential ADHD screening as well (see here)...

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[1] Bonander C. et al. Injury risks in schoolchildren with attention-deficit/hyperactivity or autism spectrum disorder: Results from two school-based health surveys of 6- to 17-year-old children in Sweden. J Safety Res. 2016 Sep;58:49-56.

[2] Silva D. et al. Children diagnosed with attention deficit disorder and their hospitalisations: population data linkage study. Eur Child Adolesc Psychiatry. 2014 Nov;23(11):1043-50.

[3] Hurtig T. et al. The Association Between Hospital-Treated Injuries and ADHD Symptoms in Childhood and Adolescence: A Follow-Up Study in the Northern Finland Birth Cohort 1986. J Atten Disord. 2016 Jan;20(1):3-10.

[4] Kang JH. et al. Attention-deficit/hyperactivity disorder increased the risk of injury: a population-based follow-up study. Acta Paediatr. 2013 Jun;102(6):640-3.

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Bonander C, Beckman L, Janson S, & Jernbro C (2016). Injury risks in schoolchildren with attention-deficit/hyperactivity or autism spectrum disorder: Results from two school-based health surveys of 6- to 17-year-old children in Sweden. Journal of safety research, 58, 49-56 PMID: 27620934