Wednesday, 4 March 2020

Neurodiversity 2.0: Judy Singer setting the record straight

I know I've kinda let this blog slip a little in recent months but work is work and blogging is blogging. Anyhow, I'm back with a short post to bring to your attention a rather important 'revision' presented by Judy Singer on her blog titled: NeuroDiversity 2.0 (see here).
I'm not going to rehash everything that Judy talks about in her post because it's all done exceptionally well in her blogpost. Neurodiversity is the term that has kinda turned into a movement (even a political movement) which has found something of a voice particularly on social media. As a critical voice to neurodiversity (see here) I would say that the concept of neurodiversity has been pushed way beyond it's original meaning and intention and well outside the scientific remit of the description (no, no-one is 'neurotypical' or NT). In her blogpost, Judy aims to clarify some important points about her description of neurodiversity and, as with all good ideas, adapts and modifies them as knowledge has increased. 

Some important things are mentioned by Judy which are worthy of note:

  • "Neurodiversity is NOT a Psycho-Medical diagnosis for individuals." She goes on to say that "if Worker A has identified themselves with a specific syndrome, e.g. Autism, in which case call them "autistic". But they are no more neurodiverse than anyone else on the planet." In other words, neurodiverse or neurodivergent are not replacements for autism or autism spectrum disorder (ASD) and they don't magically bestow some differing neurological feature(s) or advantage(s). And just before you ask, "undiagnosed neurodiversity issues" (see here) is basically psychobabble BS and a good example of how neurodiversity has gone well beyond it's remit.
  • "Neurodiversity is a term that refers to an obvious and indisputable feature of Earth's biosphere." Basically, everyone is neurodiverse. With all the millions of differing biological processes that everyone encounters and undergoes, every second of every day, neurodiversity is the property of populations not individuals.
  • "It is not a synonym for "Neurological Disorder"." I might be repeating myself here but whether diagnosed or 'self-diagnosed' (another inherently problematic issue) with anything remotely related to behaviour and/or the brain, identifying as 'neurodiverse' says nothing about a person and their presentation. 
  • "Neurodiversity is a positive principle, but it is NOT a moral principle." As the property of a population, neurodiversity says just that: everyone is different, and we should be proud of our individual differences. I know sometimes people don't like to be seen as different (group membership is a powerful thing), but everyone has strengths and everyone has weaknesses at an individual level. Yes, there are things that society can do to ensure that more strengths are seen as strengths, but that's a different topic altogether.

I'm not expecting Judy's revisions to be immediately and universally accepted by everyone. There are some really ingrained views and opinions about neurodiversity out there, and to some degree, people have already adapted the term to fit their experience and/or agenda. I am hopeful however that we can move on from identity politics (of which neurodiversity has certainly been a focal point) and start to move forward on this. Moving forward means reclaiming labels like autism and ADHD and various other labels that have often got missed from the whole neurodiversity thing (e.g. schizophrenia and psychosis) and moving away from the idea that there is something universally and inherently 'different' about the minds of those with such labels. Science has yet to pinpoint anything that universally distinguishes those diagnosed with autism from those not diagnosed with autism outside of the diagnostic features (similar to every other diagnostic label with a behavioural element to it). If and when it does, then we can start talking about possible neurodivergence, but until then it's all hot air and bluster. 

Bravo Judy for the revision and clarification.


Friday, 27 September 2019

Autism diagnosis, numbers and politics

It's been a while since I lasted posted on this blog. Apologies to those who've enjoyed my musings but time has been in short supply these past few weeks. But I'm here now...

Today I want to bring to your attention a couple of papers and news items that have caught my eye in the past few weeks. The first is the paper by Eya-Mist Rødgaard and colleagues [1] which garnered quite a bit of media attention (see here). The crux of the Rødgaard findings were that "differences between individuals with autism and those without autism have decreased over time, which may be associated with changes in diagnostic practices." It was a meta-analysis paper and so kinda reiterated what had already been discussed in the peer-reviewed science literature before, in that the autism of today might not necessarily the same as the autism of yesteryear (see here).

Second up is another recent paper from Benjamin Zablotsky and colleagues [2] (a name mentioned a few times on this blog) indicating that the only way is up when it comes to diagnoses of developmental disabilities such as autism. I noted that some interpretations of the Zablotsky results headed down the old 'better awareness' and 'not a true rise' routes (see here) despite the quite astounding increase in cases from "1 in 91 children in 2009 to 1 in 40 in 2017." In any other label / condition / disorder, such a rise would probably provoke some important questioning about why the increase and what factors could be associated with it (including the Rødgaard explanation). Needless to say that children become adults, and quite a lot of those 1 in 40 children are going to require more Government planning and money to ensure that they live good, healthy and productive lives as both children and adults. And just in case you think such a rise is a United States issue only, take a look at the stats for Northern Ireland in recent years (see here and see here) and tell me that there isn't a true rise there either.

Finally a few interesting lay articles have been published in recent weeks which deserve highlighting and debating. The first from neuroscientist and science writer Mo Costandi ruffled some feathers in his critique of the concept of neurodiversity. The by-line to the article said it all: "The movement has good intentions, but it favours the high-functioning and overlooks those who struggle with severe autism." The second article from Steve Silberman tackles a slightly different, but nonetheless related issue, on how "Greta Thunberg became a climate activist not in spite of her autism, but because of it." Both articles, whilst sharing some differences, stress how the label of autism covers a wide, wide variety of presentations and outcome. They also serve to highlight how there is seemingly no way that one can possibly advocate for the entire autism spectrum as some sort of singular label / condition / disability based on the different wants, needs and desires of such a diverse population. The sooner we start to take the plural 'autisms' more seriously, the better for everyone...

To close, no two brains are the same as seen in this 'cool' graphic. In the coming weeks, I'll be talking about a few papers that should be appearing in the peer-reviewed domain that I've been involved in authoring that stress such an important point.


[1] Rødgaard EM. et al. Temporal Changes in Effect Sizes of Studies Comparing Individuals With and Without Autism: A Meta-analysis [published online ahead of print, 2019 Aug 21]. JAMA Psychiatry. 2019;e191956.

[2] Zablotsky B. et al. Prevalence and Trends of Developmental Disabilities among Children in the United States: 2009–2017. Pediatrics. 2019. September.


Tuesday, 30 July 2019

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.


Monday, 22 July 2019

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?


[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.


Saturday, 13 July 2019

"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...


[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.


Monday, 8 July 2019

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.


[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.


Wednesday, 3 July 2019

"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).


[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.