"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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