The things people say about neurodiversity...

"Being neurodiverse means that your brain is wired differently and thinks differently about things."

That was one of the memorable quotes that was included in a piece on the BBC Newsround website recently highlighting an arts project designed "to raise awareness and celebrate a range of conditions under the umbrella term of Neurodiversity, including autism and dyslexia." More information about neurodiversity by the way, can be seen here. The page has seemingly since been altered for whatever reason...

Whilst noble in intent, the inclusion of evidence-free phrases about 'being wired differently' were included in the original text. Even more worryingly was the suggestion that: "The idea behind Neurodiversity is that conditions - such as autism - should be seen not as disabilities, but as perfectly normal differences between people." Autism shouldn't be seen as a disability eh? I'm sure that lots and lots of autistic people and their families and loved ones may disagree with such a contravention to how autism is actually diagnosed (on the basis that: "symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning").

Such a piece did not go unnoticed, with even the person credited with coming up with the term neurodiversity calling it out and posting a reminder to everyone about what was intended by her original description of the term. She's of course right to point out that everyone is neurodiverse, and how associated terms like neurotypical (NT), that still keep cropping up in the peer-reviewed science literature, are about as evidence-free as one could possibly get (see here).

The inclusion of other phrases citing 'famous people' who should also be considered neurodiverse adds to the fluffiness of the original news piece. That being said, at least there wasn't an attempt to rewrite history as has kinda been suggested on other occasions (see here) nor were the words 'everyone hovers somewhere along the autistic spectrum' used (see here) so one should be thankful for that.

I get that such news pieces want to encourage people to think differently about those with autism, ADHD and various other labels. I get that role models are important to young people whether diagnosed or not with this, that and t'other. But I do expect more from valued news channels such as the BBC. I expect them to be evidence-based. Even Newsround (which served me well in my younger years) should be evidence-based given the audience that it's aimed at. And to perpetuate a myth that autism is not a disability is, in my view, only going to further contribute to the wide-ranging inequalities that many people on the autism spectrum face day in, day out whether their disability is 'hidden' or not.

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Edentulousness (no natural teeth) and intellectual (learning) disability

Edentulousness: "The property of being edentulous; lack of teeth."

I was brought to talk about edentulousness on this blog as a result of the findings reported by Kinnear and colleagues [1] and their observations suggesting that: "Adults with IDs [intellectual disability] have a high prevalence of edentulousness."

Based on data from an "adult cohort with IDs residing in Greater Glasgow and Clyde, Scotland", researchers compared rates of edentulousness in their 560 adults with ID with (asymptomatic) population data (n=2547) on this issue. The results were pretty worrying as "rates of edentulousness were consistently higher in the ID cohort" across various different age ranges: "9% vs. 1% aged 25-34 years; 22% vs. 2% aged 35-44 years; 39% vs. 7% aged 45-54 years; 41% vs. 18% aged 55-64 years; and 76% vs. 34% aged 65-74 years." Researchers also concluded that edentulousness was quite a bit more likely in those described as having "severe IDs".

When it came to other factors outside of ID severity that might be related to edentulousness, a few issues were observed such as "taking antipsychotics" and "living in the most deprived neighbourhoods." Other variables such as the presence of a diagnosis of autism and "problem behaviours" were are told, did not reach the thresholds for 'sufficient evidence'.

Why is all this important you might ask? Well, for lots of reasons, not least that the Kinnear results potentially highlight the important (continuing) issue of health inequality in relation to learning (intellectual) disability (see here). Indeed, one of my first thoughts when I read the Kinnear results is that quite a few of those news reports about people with learning disabilities that have been seen down the years, show people missing teeth. I can't help thinking what such pictures do for a person and their self-esteem. Even worse, such findings further highlight how for some people with ID, the state of edentulousness is literally forced on them (see here) with little or no regard for the views of them or indeed their loved ones.

Such findings do suggest that organisations need to try harder when it comes to improving the oral health of those with ID. I'm minded to suggest that those people who have a history of poor diet, those who are prone to pica (eating non-edible objects), those who have bruxism (teeth grinding) and/or those who have a history of persistent vomiting should perhaps be afforded particular dental attention. The link with antipsychotic use? Well, I also think more needs to be done in this area. There is already some data on medicines affecting oral hygiene [2] among which antipsychotics seem to have a place. The hows-and-whys need a little more understanding outside of the suggestion of xerostomia (dry mouth). Despite also the lack of any significant link between 'problem behaviours' and edentulousness identified by Kinnear, I'd still like to see whether certain 'challenging behaviours' might be contributory to such a state (see here) and perhaps one reason why antipsychotics were prescribed in the first place?

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[1] Kinnear D. et al. Prevalence of factors associated with edentulousness (no natural teeth) in adults with intellectual disabilities. J Intellect Disabil Res. 2019 May 6.

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"Suicidal spectrum behaviors" and ADHD meta-analysed

"Awareness of the association between ADHD [attention-deficit hyperactivity disorder] and SSBs [suicidal spectrum behaviors] should contribute to more effectively prevent SSBs."

That was the conclusion reached in the study published by Mathilde Septier and colleagues [1] and the results of their "first meta-analysis on the association between ADHD and SSBs taking possible confounders into account." Their systematic review and meta-analysis was preregistered (see here) so we knew it would be coming.

Starting with nearly 3000 references, the available data was whittled down to just over 50 studies. The data were analysed and boiled down to reveal "a significant association between ADHD and suicidal attempts..., suicidal ideations..., suicidal plans..., and completed suicide."

What's more to say? Well such results although stark are not completely unexpected given what has already been discussed on this blog on this topic (see here and see here and see here). They serve to confirm that a diagnosis of ADHD (or even the presentation of subclinical ADHD symptoms?) should really set in motion some preferential screening for suicidal spectrum behaviours and appropriate support offered as and when detected. Minus any sweeping generalisations, such results also invite further inquiry into how certain intervention options indicated for ADHD *might* also affect risk of suicidality in the context of ADHD (see here).

If you need someone to talk to, there are organisations out there...

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[1] Septier M. et al. Association between suicidal spectrum behaviors and Attention-Deficit/Hyperactivity Disorder: A systematic review and meta-analysis. Neurosci Biobehav Rev. 2019 May 23. pii: S0149-7634(18)30941-2.

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Asking about "growing up with a sibling with autism"

The findings reported by Philippa Moss and colleagues [1] provide the blogging fodder today, and another important research venture into asking siblings about their experiences of growing up with a brother / sister diagnosed with autism. Such work continues an important theme whereby a diagnosis of autism doesn't just impact on the person concerned, but also on significant others around them too (see here). It also reiterates that the 'nothing about us without us' phrase should really be extended to include siblings as well as parents/primary caregivers and of course, those diagnosed with autism (see here)...

Researchers talked to over 50 adult siblings with a brother and/or sister with autism. They asked them questions about growing up with their sibling and importantly "about their worries for the future." The results provided an important snapshot into the experiences of siblings. It was a mixed bag in terms of positive and negative experiences; where themes like tolerance and caring were discussed in relation to how their autistic sibling had positively impacted on their lives. The not-so-positive themes included things like "coping with behavioural difficulties (39%) and disruption to family relationships (32%) or social life (23%)."

There was another important observation to come from the Moss study too: "The main concerns for the future, expressed by the majority of participants, focussed on problems of finding appropriate care (77%) and the potential emotional impact on the autism siblings of loss of parents." Such sentiments take us into some difficulty territory as the issue of long-term care comes into the discussion, alongside other issues voiced by parents such as 'why I can never die' (see here).

Given that siblings will probably emerge as the primary caregiver or at least responsible person when it comes to their brother(s) / sister(s) with autism as parents age, one can see the logic in the suggestion from Moss to "involve siblings in care planning and decision-making." Support for siblings is also required to prepare them for the future and ensure that the sentiments of 'caring for the carers' extends to them too.

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[1] Moss P. et al. Growing older with autism – The experiences of adult siblings of individuals with autism. Research in Autism Spectrum Disorders. 2019; 63: 42-51.

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"being autistic does not always make someone bad at seeing the world from another's viewpoint"

The quote titling today's post - "being autistic does not always make someone bad at seeing the world from another's viewpoint" - comes from the findings reported by Shisei Tei and colleagues [1].

Their research paper observing that "more careful attention should be paid to the idea of egocentricity in individuals with ASCs [autism spectrum conditions]" is part of a research mash-up post today that also includes the findings reported by Hidetsugu Komeda and colleagues [2]. Both papers help to put a 'real-life perspective' on to sweeping generalisations that everyone on the autism spectrum is completely egocentric and lack the capacity to help others.

The Tei study was initially based on the idea that: "Individuals with autism spectrum conditions (ASCs) often experience difficulty and confusion in acknowledging others' perspectives and arguably exhibit egocentricity." Egocentrism can mean a few things, but all have in common that self is the be-all-and-end-all, and the interests, beliefs and attitudes of others are of secondary regard. It's a concept that we all engage in to some degree at certain times of development and maturation, and from an evolutionary perspective, probably served (and continues to serve) as an important survival mechanism. But: "whether this egocentricity necessarily results in selfish behavior during social situations remains a matter of debate." Tei et al examined the possibility of a link between egocentricity and selfish behaviour in the context of autism...

I'm not totally au fait with all the ins-and-outs of the Tei study techniques - "derived from cognitive psychology and behavioral economics" - but it looks like it was quite a bit to do with response times to a "computerized visuospatial perspective-taking task (VPT)" and the use of a task to measure altruism ("disinterested and selfless concern for the well-being of others"). Compared with a non-autistic control group, they observed some differences among their tested groups but, and it is an important 'but', "having ASCs does not always exhibit selfish behavior during interpersonal communication."

Then we have the findings reported by Komeda et al. The starting point was a sweeping one: "Individuals with Autism Spectrum Disorder (ASD) often lack cognitive empathy, so they experience difficulty in empathizing with others." Their study was perhaps less complicated than the Tei study as a group of adults with autism and control non-autistic adults were asked to read a number of stories - "(12 stories featured protagonists with characteristics of ASD and the other 12 featured TD protagonists)" - and answer questions about said stories. Questioning included "How did the protagonist feel?" and "Would you help if the protagonist were in trouble?"

Results again were interesting. So: "individuals with ASD empathize with other people who have ASD and are motivated to help other people with ASD." Based also on examination of autism spectrum quotient (AQ) scores and when "controlling for alexithymia" (marked dysfunction in emotional awareness, social attachment, and interpersonal relating), authors concluded that: "the reason why individuals with ASD are considered to have limited cognitive empathy and helping behaviors could be related to alexithymia and the lack of social skills and attention to detail, which are related to atypical perception."

OK, both the Tei and Komeda findings have to be put into some perspective. They don't for example, completely exonerate the social cognition or perspective-taking issues that are seen in autism. They can't do so either, because issues with social interaction for example, are a core facet of a diagnosis of autism. In effect, they define autism. I should also add that the reliance on participants who were very much cognitively able in both the Tei and Komeda studies means that one has to be quite careful of generalising such findings to all quarters of the autism spectrum, particularly the under-studied and under-represented (see here) parts.

But as I mentioned earlier in this post, the combined findings do help to put a 'real-life perspective' on things; specifically that such core issues that have defined autism for many, many years - empathy and perspective-taking - don't always manifest in a uniform fashion across people or situations. They also suggest that various other variables also might serve to promote issues with empathy and perspective-taking in relation to autism, as per mention of alexithymia; something that has been noted before by other independent study (see here).

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[1] Tei S. et al. Egocentric biases and atypical generosity in autistic individuals. Autism Res. 2019 May 17.

[2] Komeda H. et al. Do individuals with autism spectrum disorders help other people with autism spectrum disorders?: An investigation of empathy and helping behaviors in adults with ASD. Front. Psychiatry. 2019. May 13.

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Maternal polycystic ovary syndrome (PCOS) and autism yet again

Another mash-up post for you today as I bring two papers to the blogging table discussing a topic which has already had quite a bit of airtime on this blog: maternal diagnosis of polycystic ovary syndrome (PCOS) and risk of offspring diagnosis of autism (see here and see here). The papers in question are from Maria Katsigianni and colleagues [1] and Carolyn Cesta and colleagues [2] and, via different experimental means, both papers suggest that women with PCOS have a significantly greater risk of having a child diagnosed with autism or autism spectrum disorder (ASD).

PCOS, in case you didn't know, is a fairly common condition according to the NHS entry. It's characterised by three main features: irregular periods, the presence of high levels of androgens (male hormones) and polycystic ovaries ("ovaries become enlarged and contain many fluid-filled sacs (follicles) that surround the eggs"). Mention of (male) sex hormones in relation to PCOS have led quite a few researchers to suspect a connection between PCOS and autism but another important angle to the diagnosis is a link between PCOS and insulin (the hormone involved in blood sugar control)...

Anyhow, the Katsigianni paper first. This was a systematic review and meta-analysis of the existing peer-reviewed science on the topic of "whether women with PCOS have increased odds of having a child with ASD, while, secondarily, if these women themselves are at high risk of having the disease." Now just before anyone gets shirty with the use of the word 'disease', those are the authors words not mine. I fully go with the idea that autism is not a disease. Their 'boiling down the research literature' efforts yielded 10 studies which included over 30,000 children with autism and some 320,000 "non-ASD children." The results: "Diagnosed PCOS was associated with a 1.66 times increase in the odds of ASD in the offspring" and: "Women with PCOS were 1.78 times more likely to be diagnosed with ASD." Most data on which those findings were based were deemed to be of 'good quality'.

Then to the Cesta study. The primary aim was to "measure, in the general population, the association between maternal PCOS and offspring neuropsychiatric disorders where prenatal androgen levels and/or altered androgen function have been implicated in their etiology." That population was the Sweden, and yet another example of those fantastic Scandinavian population registries being put to good research use. Autism, by the way, wasn't the only label looked at by Cesta et al: "offspring attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorders (ASD), and Tourette's disorder and chronic tic disorders (TD/CTD)."

Results: based on detecting some 20,000 PCOS-exposed offspring and 200,000 "unrelated PCOS-unexposed offspring" authors concluded that: "PCOS-exposed offspring had increased risk of being diagnosed with ADHD, ASD, and TD/CTD compared with unrelated PCOS-unexposed offspring." Interestingly Cesta observed that the association between maternal PCOS and autism and ADHD was stronger in girl offspring than boy offspring. They then go on to talk about prenatal androgen exposure "leading to ‘hyper-masculine’ behavioral and cognitive traits" in offspring as being one potential biological mechanism.

What's more to say? Well, despite the whole 'male sex hormone' *link* to autism I'd like to see a lot more investigation looking at biological mechanisms. Going back to the insulin link with PCOS, there is a requirement for further study in light of other findings (see here and see here). Insofar as implications for policy, well, preferential screening for autism in offspring when mum has a diagnosis of PCOS could be indicated. This adds to the growing number of other circumstances where such preferential screening seems to be indicated.

Oh, and there could be other areas of potential investigation to consider too (see here)...

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[1] Katsigianni M. et al. Maternal polycystic ovarian syndrome in autism spectrum disorder: a systematic review and meta-analysis. Molecular Psychiatry. 2019. March 13.

[2] Cesta CE. et al. Maternal polycystic ovary syndrome and risk of neuropsychiatric disorders in offspring: prenatal androgen exposure or genetic confounding? Psychol Med. 2019 Mar 12:1-9.

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