Polycystic ovary syndrome (PCOS) and autism continued

"These studies provide further evidence that women with PCOS [polycystic ovary syndrome] and their children have a greater risk of autism."

'These studies' refers to the studies conducted and reported on by Adriana Cherskov and colleagues [1] drawing on previous peer-reviewed research literature suggesting that there may be a *connection* between exposure to PCOS and autism or autistic traits (see here).

PCOS is a condition that affects how a woman's ovaries function. Although linked to an imbalance in certain sex hormones (specifically testosterone), one of the proposed starting points for PCOS is an elevation of insulin (a hormone that controls the amount of sugar in the blood). I'll return to this point shortly...

Cherskov et al report results from 3 studies included in their research strategy: study 1 "examined the risk of PCOS in women with autism compared to those without autism"; study 2 "examined the risk of autism in women with PCOS compared to those without PCOS"; and study 3 "examined the risk of autism in first-born children of mothers with PCOS compared to first-born children of mothers without PCOS." The autism *connection* is integrated into the idea that sex hormone exposure in-utero might play some role in the risk of autism to offspring. Bearing in mind that the participant numbers were not to be sniffed at, a few interesting results emerged from the collected studies.

So: "A significantly higher percentage of women with autism were diagnosed with PCOS than controls" (study 1). Looking at the percentages of PCOS among the groups, the results weren't exactly startling: 2.3-7.8% autism vs. 1.1-3.5% controls (depending on the PCOS criteria used) but a difference was noticed.

Then: "Autism was almost two times more prevalent in PCOS cases (n = 26,263) than in controls (n = 130,717)" (study 2). But... when authors took into account various 'psychiatric conditions' also present in mums, the results went from significant to non-significant ("p-value = 0.084"). And please, don't use the term 'approaching significance'...

Finally: "In Study 3 we found the odds of having a child with autism were significantly increased, even after adjustment for maternal psychiatric diagnoses, obstetric complications, and maternal metabolic conditions."

What's to make of this collected data? Well, the use of anonymous electronic records derived from the Clinical Practice Research Datalink (CPRD) electronic health record database here in Blighty is a strength both in record number and quality. The associated feature that other clinical findings and diagnoses outside of PCOS were also included for study is very positive too. But one has to be slightly careful about making too many sweeping generalisations from the results of such studies. I can't disagree with the sentiments expressed by the authors that: "These studies provide further evidence that women with PCOS and their children have a greater risk of autism" but we can say that the picture is complicated and not straight-forward.

Then back to the questions of 'how and why'? Thankfully, the authors don't just focus on the 'sex steroids' viewpoint but do also talk about how insulin - hyperinsulinemia - might also play a role. My gut feeling is that this is of central importance, particularly in light of observations about a diabetes connection to autism (see here for a 'meta-analysis' example) and similar observation in other studies on PCOS and autism too (see here). Add in the findings on pregnancy metabolic syndrome and autism (see here and see here), featuring an 'inability to control blood sugar levels' and things get even more interesting in this area.

Oh, and there could be other [speculative] factors to consider too (see here)...

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[1] Cherskov A. et al. Polycystic ovary syndrome and autism: A test of the prenatal sex steroid theory. Transl Psychiatry. 2018 Aug 1;8(1):136.

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"Systemisers are better at maths". But be careful of sweeping generalisations...

The title of this post - "systemisers are better at maths" - comes from the findings reported by Paola Bressan [1], an author not unfamiliar to this blog (see here). This time around, the author has opted for a topic a little less 'controversial' [2] than last time, in the form of an analysis of the 'empathising-systemising theory'. In particular, the notion that mathematics is typically a systemising activity (based on rules and laws) and so those who lean more towards being systemisers should be better at maths. That's the theory anyway...

The word 'autism' is mentioned in the Bressan paper because of the *connection* made between systemising and autism by some big names in the autism research field. As far as I can see however, the Bressan study did not include anyone diagnosed with autism or an autism spectrum disorder (ASD) but rather relied on data from mostly university students studying "mainly psychology and engineering." Said student participants (N=201) were given a couple of measures to test maths skills (including a 'how good are you at maths?' self-report measure) alongside tests for non-mathematical intelligence and 'systemising tendencies' in the form of the Italian version of the Systemising Quotient (SQ-Short).

Results: the data for the study are freely available to anyone and everyone (see here). Bressan observed a few details. So: "Systemising was predicted by sex, with men scoring on average higher than women." Occupation, I assume meaning what participants were studying, also showed a potential relationship with systemising scores too. Then to the main event: "In a sample of students of a diverse range of disciplines, the systemising score predicted both self-assessed mathematical skills (201 participants) and mathematical intelligence (151 participants). This remained true after controlling for nonmathematical intelligence, for occupation (social vs biological/physical careers), and for sex."

These are interesting results. They offer some support for the idea that cognitive style *might* be an important factor when it comes to 'success' or not in certain types of discipline, and require further study. But...

Allowing for my 'no sweeping generalisations are required' sentiments that are typically included with my analysis of research on this blog, I'm still a little reserved on this topic. I'm reserved because on the previous occasion that I've covered maths achievement and systemising (see here), the results were a little different. The paper by Escovar and colleagues [2] for example, reported that social skills seemed to be more important to maths ability. They also observed that "mathematical achievement was not related to systemizing or the discrepancy between systemizing and empathizing" in their study. Bressan criticised this study for a potential lack of statistical power, but I'm slightly less critical of those results, particularly because Escovar et al utilised a wider range of study instruments covering a wider range of potentially important variables. I'm also inclined to mention how maths ability can sometimes be clouded by other factors. Take for example another post I wrote on maths problem solving ability and autism (see here) and how issues like attention and anxiety can play a role on performance. That and also the fact that not everyone on the autism spectrum is some sort of maths genius...

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[1] Bressan P. Systemisers are better at maths. Sci Rep. 2018 Aug 2;8(1):11636.

[2] Escovar E. et al. The Empathizing-Systemizing Theory, Social Abilities, and Mathematical Achievement in Children. Sci Rep. 2016 Mar 14;6:23011.

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"Bowel perforation in chronic idiopathic megarectum and megacolon" and autism: 15 years on...

There was something all-too familiar about the case report detailed by Chukwuebuka Anyaegbuna and colleagues [1]. The description of a young man in his mid-twenties "with autism spectrum disorder" and a "history of chronic constipation" (going back years with "multiple previous admissions") eventually being admitted to intensive care on the basis of a potentially life-threatening bowel state is, unfortunately, nothing new to science and clinical practice (see here).

Bowel issues - both functional and more pathological - are over-represented when it comes to a diagnosis of autism (see here and see here for examples). The specific diagnosis of 'megarectum' detailed in the Anyaegbuna paper in relation to autism had also been noted some 15 years previously [2] in the peer-reviewed science literature. Indeed, the paper by Nadeem Afazal and colleagues [2] looking at over 100 children with autism "who were referred for gastroenterological assessment" showed that constipation was not an infrequent finding for this group. They also reported that many autistic children in their cohort "had moderate/severe loading or acquired megarectum." Their observation that "consumption of milk [was found] to be the strongest predictor of constipation in the autistic group" also chimed with me, as an interested researcher of diet as being a potentially important variable for 'some autism' [3]. And indeed, such an observation also seemingly intersects with other more recent dietary-bowel findings too (see here)...

The Anyaegbuna findings represent the continued failure of autism research and practice to take seriously the issue of bowel problems associated with autism. Stretching back over a period of about twenty years or so, I've noted the various comments from various (typically ill-informed) people protesting that various gastrointestinal (GI) investigations are 'not medically indicated' when it comes to some cases of autism. Some even made jokes about it. It's probably not unreasonable for me to say that set within this atmosphere, there has been a general reluctance to look at such issues for fear of castigation or shaming. There have been some brave research souls (see here and see here) who've kept on looking at bowel issues and autism, but not half as many as there should be. And it is those suffering with such bowel problems who have been let down: please do make sure that you take a good look at the X-rays accompanying the Anyaegbuna report to see what I mean.

Having said all that, I would like to think that things are slowly changing. It's no longer taboo to talk about bowel issues being over-represented in relation to autism. Indeed, we've had study after study all pointing in the same direction: bowel issues are seemingly related to autism, covering both childhood and adulthood. And such bowel issues might have some important effects on behaviour (see here). What we are sadly lacking at the current time however, is a concerted research effort asking 'why'? and 'what can we do to prevent (yes, prevent) such bowel issues occurring rather than just treating them when they occur?'

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[1] Anyaegbuna C. et al. Bowel perforation in chronic idiopathic megarectum and megacolon. BMJ Case Rep. 2018 Aug 20;2018. pii: bcr-2018-225406.

[2] Afzal N. et al. Constipation with acquired megarectum in children with autism. Pediatrics. 2003 Oct;112(4):939-42.

[3] Whiteley P. et al. Nutritional management of (some) autism: a case for gluten- and casein-free diets? Proc Nutr Soc. 2015 Aug;74(3):202-7.

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ADHD and asthma meta-analysed

So, the paper by Samuele Cortese and colleagues [1] kinda continues a theme from my last post (see here) on how those in receipt of various developmental and/or psychiatric diagnoses might also be more 'prone' to physical or somatic issues appearing alongside.

The headline this time around: "The combined results of the meta-analysis and the population-based study support a significant association between asthma and ADHD [attention-deficit hyperactivity disorder], which remained even after simultaneously controlling for several possible confounders in the population-based study."

The possibility of an 'overlap' between ADHD and asthma is a theme that has been explored numerous times on this blog (see here for example). What sets the Cortese results apart from the previous peer-reviewed research is the focus on using a meta-analysis (where results from multiple studies are 'boiled down' to form a statistical opinion) to provide a 'where we're currently at statement' on any possible relationship.

Taking into account information from almost 50 datasets covering "a total of 210 363 participants with ADHD and 3 115 168 without" researchers looked to estimate the magnitude of any relationship between ADHD and asthma, having previously published their intention to undertake such an analysis (see here). They did try and take into account potentially important influencing variables such as year of birth and sex/gender. They concluded that there was something to see when it came to a possible relationship between ADHD and asthma, and that: "Awareness of this association might help to reduce delay in the diagnosis of both ADHD and asthma."

What's more to say? Well, aside from advancing the idea that preferential screening should be more widespread as and when ADHD or asthma is diagnosed, the other important question should be: Why? Why should a diagnosis of ADHD increase the possibility that asthma would be present and vice-verse? Does this imply that there may be some shared mechanism(s) between the two conditions such as a role for the immune system for example? And then there is the possibility that when present together, there could be some rather novel approaches to managing both labels (see here and see here for example). No, I'm not giving anything that looks, sounds or smells like medical or clinical advice; merely suggesting that what's good for body might also be good for mind too.

And whilst mentioning the work of Cortese, I note that other recent meta-analysis results [2] from the same author might be important to ADHD too...

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[1] Cortese S. et al. Association between attention deficit hyperactivity disorder and asthma: a systematic review and meta-analysis and a Swedish population-based study. Lancet Psychiatry. 2018 Jul 24. pii: S2215-0366(18)30224-4.

[2] Cortese S. et al. Comparative efficacy and tolerability of medications for attention-deficit hyperactivity disorder in children, adolescents, and adults: a systematic review and network meta-analysis. Lancet Psychiatry. 2018. Aug 7.

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"a high rate of physical problems in children with NDDs"

NDDs mentioned in the title of this post refers to neurodevelopmental disorders, pertinent to the important results published by Setareh Alabaf and colleagues [1] on how autism and various other NDDs rarely appear in some sort of diagnostic vacuum (see here).

Including a notable ESSENCE-related name on the authorship list (see here), authors focused on various physical (somatic) diagnoses - "epilepsy, migraine, asthma, cancer, diabetes, psoriasis, lactose intolerance, celiac disease, diarrhea, constipation, daytime enuresis, encopresis" - and their frequency in a nationwide population cohort of twins that has been mentioned before on this blog (see here). The participant number totalling data on some 28,000 twins (parent reported) is not to be sniffed at, including over 1000 children categorised as having a NDD.

Results: "The results indicate a high rate of physical problems in children with NDDs, particularly in those with indications of the presence of combinations of several NDDs." I was particularly drawn to a couple of the results mentioned by Alabaf et al that tally with other independent findings. So: "asthma had the highest prevalence (14.2%)" following other peer-reviewed results (see here and see here). The authors also highlight another important physical comorbidity as being important to some: "Of the GI [gastrointestinal] problems, the most prevalent was constipation (8.4%) and lactose intolerance (5.9%)" which again aligns with other findings (see here and see here). I should mention that the study relied on telephone interviews with parents of children asking specifically whether particular physical problems were diagnosed. Yet again also responses to a questionnaire were "used as clinical proxies for ASD [autism spectrum disorder], ADHD [attention-deficit hyperactivity disorder] and LD [learning disorders], which are included in the NDD group" so one has to bear this in mind.

Another aspect to the Alabaf findings is also noteworthy: "children with different constellations of NDDs more often had coexisting physical problems as compared to children with a single NDD." This is important. It suggests that alongside the idea that a diagnosis like autism or ADHD typically do not exist in some sort of diagnostic vacuum when it comes to other psychiatric and developmental psychopathology, so the frequency of physical or somatic issues seems also to cumulative. The first thing that sprung to my mind when reading about this was the idea that 'autism genes' are probably not just 'genes for autism' (see here). And that probably goes for the presentation of somatic issues too. By saying that I don't belittle the contribution of the 'functional' immune system to autism and the various links that have been made there too [2] in a 'non-genetic' capacity.

It also means that yet again, as and when a diagnosis of something like autism or ADHD is given, professionals should be mindful that other 'preferential' screening should also be provided alongside...

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[1] Alabaf S. et al. Physical health in children with neurodevelopmental disorders. J Autism Dev Disord. 2018 Jul 24.

[2] Croen LA. et al. Family history of immune conditions and autism spectrum and developmental disorders: Findings from the study to explore early development. Autism Res. 2018 Aug 10

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"Twitter Bots and Russian Trolls Amplify the Vaccine Debate": Blame content pollutors first and foremost

"Nyet Comrade"

I'm slightly outside of my comfort zone when talking about the findings reported by David Broniatowski and colleagues [1] which has been reported in the lay media with headlines such as: "Russian trolls 'spreading discord' over vaccine safety online".

Outside of my comfort zone not just because this topic is one on the periphery of the core material of this blog (see here and see here for examples) but also because I've long held the belief that this blog should be apolitical and areligious. There are plenty of other outlets online to satisfy such needs these days. To reiterate, the typical currency on this blog is peer-reviewed science and science really should be free from politics, religion and 'allegiance'.

But here I am talking about a paper titled: "Weaponized Health Communication: Twitter Bots and Russian Trolls Amplify the Vaccine Debate" and a study which did mix science with politics. Indeed, a paper which seemingly complements a whole debate on how social media in particular, really is the mouthpiece of the masses in a global sense, but at the same time, is a media ripe for 'promoting discord'.

Set within the reality that people say pretty much anything and everything on social media and that you don't really know who you're 'socialising with' when using such resources (ever heard of 'stranger danger'), Broniatowski et al set about looking to "understand how Twitter bots and trolls (“bots”) promote online health content." The specific online health content they were interested in was "vaccine-relevant messages" as part of a scheme of work previously undertaken by some of the authors. On this occasion, they looked at well over a million tweets over a 3 year period (2014-2017) and "estimated the likelihood that users were bots, comparing proportions of polarized and antivaccine tweets across user types." They also "conducted a content analysis of a Twitter hashtag associated with Russian troll activity."

Results: "Compared with average users, Russian trolls..., sophisticated bots..., and “content polluters”... tweeted about vaccination at higher rates." Researchers observed that 'content pollutors' - "bot accounts that distribute malware, unsolicited commercial content and disruptive materials" tended to post more 'anti-vaccine content'. One would assume this was because their aim is to 'distribute malware and related materials' and by posting such provocative material, it is more likely to get people to click 'their way'.

Also: "Whereas content polluters posted more antivaccine content..., Russian trolls amplified both sides." Bearing in mind that the overall numbers of those tweets from accounts linked to that Twitter hashtag with Russian activity was small, very small, as a percentage of the whole dataset - "the researchers found 253 tweets containing the #VaccinateUS hashtag among their sample" - their content was more mixed - "43% were pro-vaccine, 38% were anti-vaccine, and the remaining 19% were neutral" - if not actually more likely to be pro-vaccine or neutral. The authors interpret this by saying "its messages were more political and divisive."

I have to say that I'm left slightly unimpressed with the interpretation being made from the Broniatowski data. I'm not quibbling with the idea that: "Accounts masquerading as legitimate users create false equivalency, eroding public consensus on vaccination" or that "More research is needed to determine how best to combat bot-driven content." Yes, social media typically does not typically have many filters ('evidence-based' or otherwise) and that is a downside to the content that users are exposed to.

But the whole 'Russian trolls' promoting 'discord' and being 'divisive' thing seems to be built on fairly flimsy evidence at best. I say this on the basis of the small number of tweets from those Russian troll accounts and the majority direction of their stance with regards to vaccines (neutral if not pro-vaccine in the majority). The bigger story here is the continued effects of 'content pollutors' and how, through their attempts to spread their 'mal-wares', so vaccination policy is being potentially undermined as a result. I say all that wearing the objective blinkers of science and recognising that I am not affiliated to any particular political group, red or otherwise.

I know there's something of an obsession these days about how 'social media is being used to subvert democracy', and how the population at large are somehow unable to form their own opinions as a function of 'what social media says'. Personally, I've always felt such sentiments belittle people, and indeed, say more about those who subscribe to such 'control' ideas than those who are actually exposed to them.

It's also interesting that, outside of the continuing search - often a desperate search - for examples of how Russia is somehow trying to 'take over the world' (😏), mention of the word 'vaccine' in the paper from Broniatowski and colleagues, taps into another topic which can ruffle feathers. I shouldn't really need to emphasise how important vaccines are as part of the modern-day medical arsenal (read Roald Dahl's account if you need more evidence of this). But there does seem to be a general feeling that if one even mentions something that distracts from the life-saving message about vaccines, one becomes persona non grata in certain quarters. Y'know, like the idea that for some groups - "immunodeficient individuals are more likely to develop complications resulting from live-virus vaccines" - vaccination might not be potentially advantageous, or how side-effects, rare as they are, can occur: "Within 48 hours after immunizations... the patient developed a fever to 38.9°C, inconsolable crying, irritability, and lethargy and refused to walk." By linking Russian trolls to social media posts about vaccination, it's not difficult to further 'demonise' various groups of people; and with it, 'pull in' (mainly) parents, some of whom are not 'anti-vaccine' but rather, have some genuine concerns about the potential effects of vaccination on their children (see here)...

And just in case anyone needs any advice on vaccination, there are lots of helpful resources around (see here and see here).

Update: 25 August 2018. The Broniatowski paper is open-access (see here).

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[1] Broniatowski DA. et al. Weaponized Health Communication: Twitter Bots and Russian Trolls Amplify the Vaccine Debate. AJPH. 2018. Aug 23.

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Screening for autism 'symptom complexes' among residents in secure children's homes

A secure children's home (SCH) mentioned in the title of this post typically refers to a place where care and accommodation is given to "children and young people who have been detained or sentenced by the Youth Justice Board (YJB) and those who have been remanded to secure Local Authority (LA) accommodation." The paper published by P.J. Kennedy and colleagues [1] provides some interesting details about the prevalence of autism or "symptom complexes compatible with ASD [autism spectrum disorder]" among young people residing in two SCHs here in Blighty, alongside some initial demographic data around those detected.

Over 110 adolescents housed in SCHs were included for study, where their support workers completed the Social Communication Questionnaire (SCQ) on their behalf. The SCQ is one of the more important autism screening questionnaires. It's not however considered 'diagnostic' and is not without it's issues (see here), hence the use of the words "Symptom Complexes Compatible with Autistic Spectrum Disorder" by Kennedy et al. The results suggested that approaching 15% of their cohort were judged to present with symptoms/traits compatible with a diagnosis of ASD. Authors also mentioned how certain 'aspects' of positive screeners might also be important; for example, "differences in gender, legal status and a history of Child Sexual Exploitation (CSE)." There's also mention of an important word - 'vulnerability' - in the Kennedy paper, which I've often said is still very much under-used when it comes to the autism spectrum (see here and see here for examples).

Whilst further work is required on autism (whether in diagnosis or 'symptom complexes') in the context of SCHs, the suggestion that autism or autistic traits may be over-represented among SCH residents is an important one. I should add that whilst SCHs house those who have been 'detained or sentenced by the Youth Justice Board' they do also cater for quite a wide range of issues/difficulties outside of those presenting with offending behaviour. This includes those who may be at risk to themselves and others alongside those with mental health difficulties. This is an important detail in the context that I don't want to promulgate the idea that towards 15% of 'offenders' have an undiagnosed autism spectrum disorder (ASD). We don't yet know this, and need to keep in mind other important issues such as the growing realisation that autism rarely exists in a diagnostic vacuum (see here) and what that might mean for those on the autism spectrum who do offend (see here).

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[1] Kennedy PJ. et al. Brief Report: Using the Social Communication Questionnaire to Identify Young People Residing in Secure Children's Homes with Symptom Complexes Compatible with Autistic Spectrum Disorder. J Autism Dev Disord. 2018 Jul 17.

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On 'negative first impressions' and autism: even those on the autism spectrum are prone to them

The findings reported by Ruth Grossman and colleagues [1] talking about 'perceptions of self and others' in the context of autism are really quite intriguing. Researchers reported that when adolescents, either diagnosed with or without autism, were shown brief video clips of adolescents with and without autism (and not explicitly being told about whether actors were autistic or not), "all participants provided more negative judgments of autistic than neurotypical adolescents in the videos." I've hyperlinked that mention of the word 'neurotypical' to some previous discussions on this blog about how this term really is a misnomer...

OK, let's rewind a little. Grossman et al mention that: "Neurotypical adults often form negative first impressions of individuals with autism spectrum disorder and are less interested in engaging with them socially." Such sweeping sentiments are based on other research that she has been involved in (see here) observing that "the social presentations of individuals with ASD, particularly their non-verbal cues, including prosody, facial expressions, and body posture, are perceived less favorably and are associated with reluctance on the part of observers to pursue social engagement" [2]. I should add that 'undergraduates' were the "rating participants" on that research occasion; a participant group who may not be as representative of the general population [3] as many people might think.

Further study in this area [4] revealed that diagnostic disclosure and "increased autism understanding" seemed to improve such first impressions. They also revealed that once again, the diagnosis known as schizophrenia was viewed even less favourably; heaping yet more stigma and misery on to this label and those diagnosed with it.

The most recent Grossman findings added a new dimension to such 'first impression' research by including young adults with autism into their study. They specifically started out by mentioning that: "individuals with autism spectrum disorder actively seek out the company of others who share their diagnosis", I assume, on the basis that 'like attracts like' across various types of relationship, and 'shared' characteristics might be more likely to provide shared viewpoints and shared understanding. That's the [sweeping] theory anyway. The fact however that those on the autism spectrum were seemingly not immune to those initial negative judgements "without being explicitly informed of a shared diagnosis" kinda implies that at least when it comes to first impressions, those on the autism spectrum aren't so dissimilar from those results from the not-autism cohort.

Should anyone be surprised by these findings? Well, I was initially taken aback by them, particularly when so much was (and still is) made of the idea that society and it's 'reactions' to autism is part of the reason why some of those on the autism spectrum feel disabled. I don't want to get into any ideological debates or discussions about the application of the social model of disability to autism ("disability is caused by the way society is organised, rather than by a person’s impairment or difference") but I can think of some occasions where those original 'first impression' findings were suggested to be supportive of such a model. The Grossman findings also don't discount the social model of disability; indeed they're supportive of it from a first-impressions point of view. But they do blur the distinction between autism and 'neurotypical' in terms of who makes those first impression responses. In short, a diagnosis of autism does not seemingly mean prejudice-free nor does it necessarily mean that everyone on the autism spectrum probably wants to, or necessarily seeks out, the company of like-minded spectrum people. Yet again, sweeping generalisations about autism falls...

I would like to see more investigations done in this area. I've talked about the use of the student population in this post already, so the next step would be talking to your average Joe or Josephine who doesn't rely on getting a 'class credit' for their study participation to gauge their views. It's also important to see whether variables like baseline 'familiarity' with autism (if there is such a thing!) or chronological age of raters are also consistent with such findings: are older folk for example, who've lived a little longer and experienced a bit more in their lives, more or less likely to hold a particular 'first impression' view of autism? Does it also vary according to the 'severity' of autism presentation?

Assuming also that it is rather difficult to significantly impact on one persons first impression of another, I'd like to know further details about why those negative judgments were formed. 'Social skills' were part-and-parcel of the Grossman analyses but this covers quite a lot of ground. We are also told that: "Both participant groups spent less time gazing at videos of autistic adolescents" implying that poise, posture and other physical features/characteristics might similarly be important in grabbing and keeping someones (positive) attention. Going back to the previous research where the (mis)label of schizophrenia was mentioned, I'd also like to see the inclusion of autistic voices when it comes to this area too. So, do the same prejudices about something like schizophrenia hold for those on the autism spectrum? What about other mental issues and illnesses such as depression and/or anxiety? I say this also bearing in mind that labels like schizophrenia, depression and anxiety are sometimes not unfamiliar facets of the autism spectrum (see here and see here), in a world where autism typically does not exist in a diagnostic vacuum (see here)...

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[1] Grossman RB. et al. Perceptions of self and other: Social judgments and gaze patterns to videos of adolescents with and without autism spectrum disorder. Autism. 2017. July 17.

[2] Sasson N. et al. Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments. Scientific Reports. 2017; 7: 40700.

[3] Hanel PHP. & Vione KC. Do Student Samples Provide an Accurate Estimate of the General Public? PLoS ONE. 2016;11(12):e0168354.

[4] Sasson NJ. & Morrison KE. First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers. Autism. 2017 Oct 1:1362361317729526.

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The continuing legacy of DDT? Maternal insecticide levels and risk of offspring autism

I see that the paper published by Alan Brown and colleagues [1] reporting on "the first biomarker-based evidence that maternal exposure to insecticides is associated with autism among offspring" has been garnering headlines and ruffling feathers in equal measure.

It's seemingly guaranteed that whenever a study mentions words like 'toxins' and 'environment' in the context of (some) autism, some brows become furrowed, decrying any possibility of a *connection*. In equal measure, it has to be said, opposite views on such evidence being proof positive that 'autism is all environmental' and 'man-made' also emerge. To quote from an imaginary character: "Darkness rises and light to meet it!" (I'll leave you to decide which side is which).

DDT - dichlorodiphenyltrichloroethane - mentioned in the title of this post, is an insecticide categorised as a persistent organic pollutant (POP). Like many such products, it started off being used with noble intentions, to control important diseases like malaria and typhus, and even earned someone a Nobel prize as a result. It's also credited with saving millions of lives during the period of its use; as one WL Churchill apparently said: "The excellent DDT powder has been found to yield astonishing results against insects of all kinds, from lice to mosquitoes."

But things did not remain so rosy for DDT as data (see here) and a book subsequently emerged suggesting a link between exposure to DDT and various adverse animal and human outcomes. Restrictions on use and banning eventually came into effect and the glory days of DDT started to wane, albeit not with everyone being totally supportive of an outright ban. As per the POP status of DDT however, restrictions and banning did not mean that this stuff magically disappeared from the environment overnight. Coupled to a less than universal ban on the use of DDT, and residues of DDT can still be found in the environment today, albeit in lower levels than when it was at peak production and usage. And science is able to test for them fairly accurately...

Set in this context, the Brown paper did just that; the DDT 'connection' stems from researchers noting that levels of a specific metabolite of DDT - p,p'-dichlorodiphenyl dichloroethylene (p,p'-DDE) - measured in "maternal serum specimens from early pregnancy" seemed to show a 'threshold' *association* with offspring developmental outcomes such as autism (with and without intellectual disability). This, in the context that there is also some evidence of 'transplacental transfer' of such compounds [2], and where other studies have talked about the possible effects of in-utero exposure to DDT and offspring neurodevelopment [3] as part of a wider appreciation that infants and children may be uniquely sensitive to such pesticide exposures (see here). Brown et al report such results as part of the Finnish Prenatal Study of Autism (FIPS-A), an initiative that has already yielded quite a few important peer-reviewed findings (see here), some of which have been previously covered on this blog (see here for example). Study organisation and participant numbers are pretty good in the FIPS-A initiative, albeit with some methodological caveats (i.e. the use of observational study not able to prove cause-and-effect).

The finding of a 'dose-related' (threshold-related) relationship between p,p'-DDE and offspring autism risk noted by Brown is also interesting. Add in the observation that autism accompanied by intellectual (learning) disability also seemed to show an apparent relationship to p,p'-DDE levels and there is a scheme of additional work to be followed. Not least with regards to mechanism(s) - preterm birth risk has been mentioned which could 'overlap' with some autism-related data [4] - and whether for example, other risk 'compounds' might also be important. Indeed, I understand that the possibility of 'synergistic' interactions might be on the cards in future study for this group in light of previous results [5]. And going back to those findings from Eskenazi et al [3] who noted that "breastfeeding was found to be beneficial even among women with high levels of [DDT] exposure", I do wonder if this variable might also require further examination in the context of the Brown findings too [6].

Obviously one has to be slightly careful with any sweeping generalisations made as a result of the Brown findings. This research did not say that all autism was 'caused' by DDT exposure or any other insecticide or related compound, and neither was it designed to do so. The authors also mentioning that their study "has implications for the prevention of autism" is perhaps more than a little premature and seemingly at odds with some (recent) opinions.

But the Brown study did make a point of testing for DDT metabolites in mums-to-be and, set within other independent research findings *highlighting* various other pollutant exposures as potentially being relevant to the developing brain and important offspring outcomes like autism (see here and see here and see here for examples), one cannot simply brush off the Brown results and their important implications. Further research is implied minus hype.

Coincidentally, a 'roadmap' for incorporating the 'exposome' into psychiatry research was recently published [7] and could prove quite useful in the context of further research in this area...

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[1] Brown AS. et al. Association of Maternal Insecticide Levels With Autism in Offspring From a National Birth Cohort. Am J Psychiatry. 2018 Aug 16:appiajp201817101129.

[2] Zhang X. et al. Transplacental transfer characteristics of organochlorine pesticides in paired maternal and cord sera, and placentas and possible influencing factors. Environ Pollut. 2018 Feb;233:446-454.

[3] Eskenazi B. et al. In utero exposure to dichlorodiphenyltrichloroethane (DDT) and dichlorodiphenyldichloroethylene (DDE) and neurodevelopment among young Mexican American children. Pediatrics. 2006 Jul;118(1):233-41.

[4] Agrawal S. et al. Prevalence of Autism Spectrum Disorder in Preterm Infants: A Meta-analysis. Pediatrics. 2018 Aug 3. pii: e20180134.

[5] Cheslack-Postava K. et al. Maternal serum persistent organic pollutants in the Finnish Prenatal Study of Autism: A pilot study. Neurotoxicol Teratol. 2013 Jul-Aug;38:1-5.

[6] Tseng PT. et al. Maternal breastfeeding and autism spectrum disorder in children: A systematic review and meta-analysis. Nutr Neurosci. 2017 Oct 18:1-9.

[7] Guloksuz S. et al. The Exposome Paradigm and the Complexities of Environmental Research in Psychiatry. JAMA Psychiatry. 2018 Jun 6.

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"Prenatal Tdap vaccination was not associated with an increased ASD risk"

The findings published by Tracy Becerra-Culqui and colleagues [1] reporting on a lack of any significant *association* between exposure to tetanus, diphtheria, acellular pertussis (Tdap) vaccination during pregnancy and subsequent risk of autism spectrum disorder (ASD) provide the blogging fodder today.

Such results, based on a cohort size of 80,000+ children with continuous enrolment at Kaiser Permanente Southern California (KPSC) hospitals in the United States (US), should set minds at ease when it comes to the safety of this important vaccine when used during pregnancy. Even more so when one realises that pregnancy infection and vaccination analysis in the context of autism is a bit of strong point when it comes to Kaiser Permanente data (see here for example).

Tdap vaccination used during pregnancy, according to the US CDC, is an important tool specifically in the fight against pertussis, also known as whooping cough; so named as a result of the characteristic 'whoop' that occurs during the illness. The immunity provided by vaccination to a pregnant mum is able to also cover the important period after birth before an infant is old enough to be themselves vaccinated against the disease. The data on the effectiveness of pregnancy Tdap vaccination is encouraging, insofar as reducing the risk of infant whooping cough illness prior to them receiving their own vaccination.

As the authors point out (and a search of PubMed confirms), at the current time there doesn't previously appear to have been any peer-reviewed research suggestion that pregnancy use of Tdap vaccination raises the risk of offspring autism. The vaccine has also been 'cleared' in relation to "risk of small for gestational age, preterm delivery, or low birth weight in infants"; factors which have been *linked* to offspring autism risk previously (see here for example) alongside various other developmental outcomes on more than one occasion. But before this study "longer-term outcomes such as the risk of ASD, an outcome of significant public interest" had not been specifically looked at or mentioned in the context of Tdap.

The results of the Becerra-Culqui study have been summarised in an editorial in an affiliated outlet [2] to the journal where published and have also featured in other news sites too (see here). The long-and-short of it was that the rate of offspring autism was not significantly different when mum received the Tdap vaccine during pregnancy compared with mums who didn't. The autism incidence rate "was 3.78 per 1000 person years in the Tdap exposed and 4.05 per 1000 person years in the unexposed group." Variables like year of birth and parity also didn't seem to alter the results either.

But there were some issues to consider in the study design that were also highlighted by the authors. So for example: "There was an average difference of 6 months in follow-up time between both groups (unvaccinated, mean: 4.44 years [SD: 1.18]; vaccinated, mean: 3.85 years [SD: 1.29])" which meant that the study could have 'missed' some later diagnosed cases of autism, particularly in the vaccinated group. Indeed authors conclude: "we likely did not capture some children with ASD born in later study years considering that some children with milder ASD would not be diagnosed until they reach school age." Accepting that the description of 'milder ASD' is not a technical term, it's a shame that a more uniform follow-up period was not built into the study design. Particularly when there is data indicating that: "The median age of earliest known ASD diagnosis was 52 months" [3] in the United States; a figure that has not varied significantly over the past few years [4] and a median age of diagnosis that is not so dissimilar from one also reported here in Blighty (see here). And given that Becerra-Culqui has also previously published on the 'timing of autism spectrum disorder diagnosis' [5] so perhaps authors should have been aware of the literature on 'what age autism is typically diagnosed at' and adjusted accordingly.

What's more to say? Well, not much more really. Pregnancy Tdap vaccination appears to be safe based on such population data analysis and bearing in mind the follow-up caveat just discussed. Given the important protection the vaccine affords both to mums-to-be and their offspring against a pretty awful disease such as whooping cough, physicians can confidently recommend it. By saying this, I don't want to play down those follow-up differences nor the possibility of rare side-effects occurring for certain people (see here). But increasing offspring autism risk when such a vaccine is used during pregnancy does not seem to one of them...

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[1] Becerra-Culqui TA. et al. Prenatal Tetanus, Diphtheria, Acellular Pertussis Vaccination and Autism Spectrum Disorder. Pediatrics. 2018. Aug 13.

[2] Jenco M. Study: Prenatal Tdap not linked to autism. AAP News. 2018. Aug 13.

[3] Baio J. et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Summ. 2018 Apr 27;67(6):1-23.

[4] Wingate M. et al. Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network, 11 sites, United States, 2010. MMWR Surveill Summ. 2014 Mar 28;63(2):1-21.

[5] Becerra-Culqui TA. et al. Parental First Concerns and Timing of Autism Spectrum Disorder Diagnosis. J Autism Dev Disord. 2018 May 12.

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"Many people with autism could be homeless": conflating a diagnosis of autism with significant proxy-reported autistic traits

Here I go again. Taking issue with a media headline seemingly designed to grab attention and clicks: "Many people with autism could be homeless." And how said headline doesn't quite match up with the findings of a study upon which it is supposed to be based. It's not the first time this has happened (see here) and I very much doubt that it will be the last...

The study in question was the one published by Alasdair Churchard and colleagues [1] who attempted to fill "a gap in knowledge" concerning anecdotal evidence suggesting that "autistic people experience an elevated risk of homelessness." Researchers report results based on the "entire caseload ( N = 106) of a UK homeless outreach team" where data about autistic signs and symptoms were gathered from second-hand accounts (outreach workers). Authors reported that around 1 in 10 homeless people who underwent such proxy reporting *could* have fulfilled the diagnostic criteria for autism (one homeless person had a previously recorded diagnosis of autism apparently). Around a further 9% received a 'marginal' report insofar as autistic traits reported as being potentially present, but not necessarily to the extent of reaching clinical cut-off points. Researchers also summarised their results for the lay audience too (see here).

I'm pretty sure that you can see some of the 'incongruence' between the 'many people with autism could be homeless' headline and what the study actual did and reported on. I should also mention that although the DSM-5 was the diagnostic criteria relied on during the study, the authors highlight how this was administered via their own 'creation' - "a DSM-5 Autistic Traits in the Homeless Interview, which we call the DATHI." I don't want to poo-poo such an instrument and it's usefulness in the context of autism and homelessness, but I would like to see a lot more work on its reliability and validity in future studies before any big judgements (or even bigger headlines) are made. Even better would be talking to and directly screening homeless people for autism as a next research stage; to help for example, with important clinical decisions such as whether 'symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning' to them as per the DSM-5 guidance on receipt of an autism diagnosis. Obviously such direct questioning might not be easy. One also needs to consider whether the status of homelessness might itself contribute to such 'significant impairment in social and occupational' functioning? Also throw in the idea that autistic traits are not necessarily just indicative of autism (see here for one example) and you have a recipe for some significant misunderstanding around the risk of homelessness and a diagnosis of autism which could further stigmatise. Sweeping generalisations about autism have already done more than enough damage down the years, often built on fairly flimsy evidence.

I'm not saying that there is no possible connection between autism (or autistic traits) and the status of homelessness. On the contrary, when one looks as the some of the myriad of reasons why a person becomes homeless (see here), there's more than a pinch of overlap with issues faced by those with autism. I will particularly highlight vulnerability variables like unemployment, poverty, poor physical and mental health and a lack of social support as being some of the most obvious commonalities. There are probably others. And where autism is identified in the homeless, one would expect there to be some added incentive to ensure they are well and given the advice and help they want/need to take care of themselves. Bearing in mind that is, that we aren't really in any position to dictate anyone's living arrangements to them...

And there's one final point to consider: various studies for example, have already talked about 'homelessness and the mental health scandal' (see here) where, in some cases, 4 out of 5 homeless people have been identified as having a mental health issue. Symptoms and diagnoses such as schizophrenia/psychotic disorder, mood and anxiety disorders and intellectual disability have all been talked about in the context of homelessness [2] alongside issues like substance abuse. Some of these labels/diagnoses have even been identified as having a direct influence on rough sleeping behaviour by some people (see here). You could well say that many of those behavioural and psychiatric labels/diagnoses have also featured in autism (see here and see here and see here for examples) and that within the context of 'autism rarely appearing in a diagnostic vacuum', so autism might then show a link to homelessness. But I'd be very careful to just singling out autism in this context. Very, very, very careful indeed...

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[1] Churchard A. et al. The prevalence of autistic traits in a homeless population. Autism. 2018 Apr 1:1362361318768484.

[2] Nishio A. et al. Prevalence of Mental Illness, Cognitive Disability, and Their Overlap among the Homeless in Nagoya, Japan. PLoS One. 2015 Sep 17;10(9):e0138052.

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Robot-mediated intervention and autism: fun but is it genersalisable?

For any Sci-Fi fan like me, mention of the word 'robot' conjures up various iconic images. Outside of the obvious, you have lovable robots like Twiki from the 1980s film/series that was Buck Rogers in the 25th Century. You also have the not-so-lovable robots like the Cylons from the original (and best) film/series that was Battlestar Galactica or even the spider robots designed (on screen) by a member of Kiss (yep, you heard me right). There are lots of examples.

These days the early dreams that robots might become an integral part of modern living have kinda come true albeit typically without the homicidal intent that their portrayal almost always seemed to imply. These days robots are our friends and helpers and are seemingly present in many areas of our modern infrastructure...

Set in this context the paper by Clare Huijnen and colleagues [1] provides a welcome analysis of the "roles, strengths and challenges of robot-mediated interventions using robot KASPAR [Kinesics and Synchronisation in Personal Assistant Robotics]  for children with autism spectrum disorder (ASD)." Authors concluded that there are some strengths to the application of robots to intervention with autism in mind, but also a few 'be careful' issues too...

Just in case you might not know, KASPAR is a social robot designed to "act as a social companion" to improve quality of life for children on the autism spectrum [2]. He/she/it is a little jarring to initially see (Leatherface sprung to mind) but works on the premise that as a robot he's 'safe and predictable' and because of that predictability, he might provide a good opportunity to help children on the spectrum learn certain skills, particularly around social interaction and communication. Noble sentiments.

Huijnen and colleagues decided to ask various care and education professionals - presumably with an interest in autism - about their views on KASPAR. Specifically: what role he/she/it might play, alongside the strengths and potential challenges around the use of such technology. The results were interesting insofar as positives like "personalisation possibilities, its playfulness... its neutral expression,... and repetitive application of actions." There's potentially lots that a robot could do that might be useful for some children, particularly children who crave predictability.

But just as interesting and important were the down-sides to such robot use, and in particular: "difficulties with generalisation or transfer and finally potential dependence on KASPAR." In other words, we're not yet living in the 'I, Robot' world where autonomous robots walk among us, and so one has to be quite careful that children aren't just being 'trained' to interact with KASPAR or similar robots rather than real people.

I've watched the emerging 'robots for autism' scene play out in the peer-reviewed science domain. I've watched various groups proudly showcase their technology and the promises that it holds. It's great to see this embracing of tech in many areas of autism research and practice but it has, I have to admit, always left me with niggling questions and doubts. Questions/doubts about whether this is just 'cosmetic' research or whether there is real potential for such technology...

I am particularly concerned that using robot-mediated intervention in the context of autism does one thing and one thing only: it 'teaches' children to interact with a robot. It provides a false reality that, whilst initially, might produce some gains for some children, does not in the longer-term prepare children for the very complicated social world. Interacting with a robot is not the same as interacting with children in a school playground or later, interacting with people in the workplace and beyond. Interacting with a robot is not the same as sitting in a job interview or interacting with the human face(s) of our very complicated social benefits systems to ensure suitable allowances are (rightfully) provided. Interacting with a robot is, well, interacting with a robot.

I'm not totally poo-pooing this work. There may yet be potential from such robot interactions that may provide transferable skills. At the moment however, we have little to no scientific data to backup the idea that robot-mediated intervention is anything more than a fun addition to the learning experience over some long-term meaningful teaching tool. Certainly, we have nothing to suggest that social interactive skills for example, are going to be significantly improved in the longer-term by sitting down and interacting with a robot.

To close, kids, don't be swayed by your robot companions...

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[1] Huijnen CAGJ. et al. Roles, Strengths and Challenges of Using Robots in Interventions for Children with Autism Spectrum Disorder (ASD). J Autism Dev Disord. 2018. July 17.

[2] Huijnen CAGJ. et al.  How to Implement Robots in Interventions for Children with Autism? A Co-creation Study Involving People with Autism, Parents and Professionals. J Autism Dev Disord.  2017;47(10):3079-3096.

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Even more on wandering and autism

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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"aggressive behaviour is not a choice for children with autism": a legal decision with implications...

The quote heading this post - "aggressive behaviour is not a choice for children with autism" - reflects a legal ruling rather than a piece of peer-reviewed research that more typically appears on this blog. The ruling, which was reported in several media outlets (see here and see here), concerns an appeal over "a 13-year-old boy with special educational needs who had been excluded from school because of aggressive behaviour that was linked to his autism."

The details of the case concern various incidents where the boy - referred to as 'L' - struck a teaching assistant with a ruler as well as pulling her hair and punching her. As a result, the school gave L a one-and-a-half day exclusion. The exclusion was challenged on the basis that L was being denied an education as a result, in contravention of his human rights. The judge agreed and deemed the exclusion discriminatory on the basis that the presentation of such aggression was 'not a choice' but instead his "behaviour in school is a manifestation of the very condition which calls for special educational provision to be made." The National Autistic Society (NAS) here in Blighty was involved in bringing this appeal and have highlighted what it means: "all schools must make sure they have made appropriate adjustments for autistic children, or those with other disabilities, before they can resort to exclusion."

Of course this is all good news for children on the autism spectrum and their parents. It stresses that school exclusion should always be a tool of last resort as enshrined in law. It means that such 'challenging behaviours' should always be investigated as a 'sign of unmet need' and appropriate provision put in place to 'work through and manage' rather than exclude as a first reaction. This is really important and will influence many, many futures; hopefully also reversing a worrying trend (see here). It also means that schools excluding pupils or trying to exclude pupils perhaps on the basis of "their results not counting against the school" or similar sentiments, have been given notice...

But there is another side to this coin, and one that may also have equally important long-term repercussions for autism and the autism spectrum: aggression or aggressive behaviour is now inextricably *linked* to autism. And the removal of the word 'choice' from such 'tendency to physical abuse' behaviour - "through no fault of their own... akin to a spasmodic reflex" - starts to place such actions and behaviours in law in a similar position to that of various other developmental and psychiatric labels. 'Vulnerability' it seems, continues to retain it's relevance to autism (see here).

Not to carry on with casting a dark cloud over such a ruling, there is another group of people often forgotten in such cases for whom such a judgement will also likely have an important effect: teachers and teaching assistants who are often working at the 'sharp end'. Indeed, in one of the news reports on this case, there are some important points made by a union representative: "school staff members are attacked at work on a daily basis - from verbal abuse, to being spat at, kicked and punched. But they love their jobs, love the kids and want to carry on doing their best for the children. They understand these pupils can lash out and violent incidents can occur. All they ask is their school backs them up when it does happen - and takes the common sense steps needed to protect them." Such a ruling is unlikely to aid in the recruitment and retention of teaching and support staff who, just as anyone else in any other profession, also have enshrined rights at work when it comes to their health, safety and wellbeing. And without an appropriate intake of such often under-paid, under-appreciated staff, the education system, including that relevant to special educational needs, can only be put under even more stress and strain coupled to the current funding issues. A vicious cycle continues and is only likely to accelerate (see here).

Further research aplenty [1] is required on this important topic. Research on how to make school a more welcoming place for all is the primary objective and already implied. Every child deserves a decent education, and school should also be a place where happy memories are made and remembered for a lifetime. It's not an impossible task by any means; there are schools out there catering for various different needs and doing it well, if not in an 'outstanding' capacity. Good practice needs to be shared and shared widely. Minus any 'blame game' indications, such a ruling also means that some further calm and objective discussions and investigations about ways to reduce and minimise acts of physical aggression should at the same time, also be prioritised (see here and see here and see here for some possible research directions). Minus that is any psychobabble explanations, sweeping generalisations or 'one-size-fits-all' sentiments being expressed...

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[1] Brede J. et al. Excluded from school: Autistic students’ experiences of school exclusion and subsequent re-integration into school. Autism. 2017. Nov 9.

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On the question of suicide risk and chronic fatigue syndrome / myalgic encephalomyelitis continued

The paper by Andrew Devendorf and colleagues [1] brought me back to a complicated and sensitive topic previously discussed on this blog (see here) regarding the issue of suicide risk in the context of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Specifically, the Devendorf findings provide some potentially important information about the possible reasoning behind suicide risk in the context of ME/CFS: "(1) feeling trapped and (2) loss of self, loss of others, stigma and conflict."

Based on discussions with 29 people diagnosed with ME/CFS "who endorsed suicidal ideation but did not meet depression criteria" researchers, including one Leonard Jason (see here), discussed some of the hows-and-whys of such suicidal ideation. As per the 'did not meet depression criteria' sentiments of the research, this work was less about 'mental health diagnoses affecting suicide risk' and more about how thoughts, feelings and situational factors might play a role. And as per the two variables highlighted by the study - 'feeling trapped' and 'loss of self & others and the stigma and conflict' generated by this incapacitating condition(s), some clear areas for further research and clinical attention emerged.

I've covered the sensitive issue of suicide (risk, ideation, completion) quite a few times on this blog for all-manner of different reasons (see here and see here for examples). In the most part, my musings have been on research into suicide where a specific label/condition/disorder has been diagnosed, and how facets of such labels/conditions/disorders *might* at least partially, 'intrinsically' elevate the risk of suicide ideation or beyond. The Devendorf findings kinda deviate from such 'intrinsic' sentiments, insofar as examining the implications of an acquired physical disability (see here and see here) and the onward the physical (and mental) restrictions of a condition seemingly elevating the risk of suicidality. By saying all that, I'm not making any sweeping generalisations...

I don't think anyone should really be surprised by the Devendorf results. With ME/CFS you have a condition that literally steals life from people; for example, rendering previously fit and active people to sometimes being bed-bound for days and days (or even longer) at a time. Add in a 'boom-bust' pattern of symptoms (see here) and the various 'environmental' effects (to employment, finances, social life, etc) of the condition, and well, I'm often surprised how resilient people with ME/CFS are.

I noted also how the words 'stigma' and 'conflict' were also detailed in the Devendorf study, and what implications this might have for quite a few areas of current research and clinical practice in relation to ME/CFS. I'm thinking specifically about the whole 'biopsychosocial (BPS) thing' that seems to have pervaded ME/CFS thinking down the years (see here), and how psychology in particular, seems to have over-stepped it's usefulness in relation to ME/CFS. It's kind of a coincidence that as I write this post, another article including Keith Geraghty [2] on the authorship list, is published discussing how some ME/CFS patients and patient groups have been labelled as 'militant' (or similar words and phrases) on the basis of them pushing back against medical dogma as a function of their own experiences of BPS-backed 'intervention' for example (see here). Militant is one word that has been used, 'vexatious' is another (see here).

"Participants emphasized that they were not depressed, but felt trapped by the lack of treatments available." This sentence serves to reiterate that suicidality in the context of ME/CFS is perhaps not something that should necessarily be thought of as intrinsic to the condition(s). It emphasises how issues like 'hopelessness' at the state of medical knowledge about ME/CFS, about the lack of biological explanation for the condition, and the lack of intervention options (not BPS guided I might add) may play a role in thoughts and feelings related to suicidality. It also provides another rather pressing reason why less 'psychologising' and more biological science needs to be dedicated to the hows-and-whys of ME/CFS and the search for a cure...

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[1] Devendorf AR. et al. Suicidal ideation in non-depressed individuals: The effects of a chronic, misunderstood illness. J Health Psychol. 2018 Jul 1:1359105318785450.

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