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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"In the milder forms I think it's just a personality variant." Temple Grandin on autism

I draw your attention today to the transcript of an interview (see here) between a Scottish broadcaster, Rona Dougall, and Dr/Prof.Temple Grandin, following Prof. Grandin's recent appearance (Spring 2019) at a conference in Scotland.

The transcript provides readers with quite a lot of insight into Prof. Grandin's views about autism; both from a personal perspective of being diagnosed with autism (and perhaps being one of the most well-known autistic people) and also with reference to some wider discussions about autism.

Alongside the important message that Grandin wants to "see people that learn differently, people that might be labelled with autism getting good jobs" one particular part of the interview stuck out for me: "Rona: How do you define and diagnose autism? Temple: In the milder forms I think it's just a personality variant. In the more severe forms, where the individual remains nonverbal, that is definitely a disability."

I was interested in the notion that 'milder forms' of autism were seen as akin to "a personality variant" by Grandin, whilst more 'severe forms' were labelled "definitely a disability." Interested because, there are some on-going debates in various circles about (a) how one should 'classify' autism from the point of view of how much of an impact symptoms have on daily living, and (b) how the presentation of autistic traits are not solely confined to a diagnosis of autism or autism spectrum disorder (ASD).

On the first point about 'classifying' autism, there is, as I say, debate about how symptoms can variably present and how best to describe the 'differences' between someone diagnosed as being on the autism spectrum who for example, is verbal, is able to navigate the social world to some degree, hold down a job and perhaps raise a family, compared with someone who has no (verbal) language, requires a high level of daily living support and who is likely to need lifelong assistance and support for sometimes simple tasks. Such heterogeneity has been present for many years under the diagnostic label of autism; further compounded by the recent-ish disappearance of Asperger syndrome in current and planned diagnostic texts (see here and see here).

The commonly used terms 'high-functioning' and 'low-functioning' don't seemingly provide the necessary words to differentiate 'levels of autism'; also being perhaps a little demeaning to those they are meant to represent. Outside of the negative connotations of 'low-functioning', one can perhaps see how 'high-functioning' as a term for 'can function' does not always convey the real-life message when it comes to the presentation of autism. I'm thinking specifically about the issue of suicidality and autism for example (see here) and the shocking statistics that continue to emerge. Likewise, to talk about autism in the context of 'severity' comes up against similar obstacles. 'Severe autism' could potentially describe anyone on the autism spectrum during moments of 'meltdown' for example. Indeed, the 'high-functioning' non-severe autistic child who just got handed a school exclusion for having an aggressive meltdown (yes, I said aggression) in class may very well be described as having severe autism in the same way that a 'low-functioning' child screaming and banging their head whilst covering their ears may thus be described. The endpoint in both cases being that autism is significantly and severely affecting both their lives at that point. I firmly believe a lot more thought needs to go into such 'classification' issues (see here) including more mention of the concept of 'profoundness' and perhaps further utilisation of the DSM-5 'support gradings' (see here) which have been installed.

Insofar as the second point covering 'mild' autism as a 'personality variant' and the issue that the label autism does not have exclusive rights to the presentation of autistic traits, another area of interest opens up. I've talked quite a bit on this blog about how autistic features / traits / symptoms are readily seen across a whole variety of different labels (see here and see here) and what this means for the concept of 'self-diagnosis' for example, that is sometimes seen / discussed on social media in particular (see here). Drawing specifically on the presentation of autistic traits in something like borderline personality disorder (BPD) [1] one could very well express an opinion that yes, autism in some cases may well be akin to a personality variant. Such a line of reasoning fits well with the (still emerging) concept of neurodiversity as applied to autism (see here) where autism is viewed as a "natural variation" [2].

But then the questions arise: at what point does autism cease to be a 'personality variant' to then becoming 'definitely a disability'? Is it just based on the acquisition of spoken language? Grandin does mention a few times in the interview about autism "in the milder forms, where the person is fully verbal" so perhaps showing an inclination towards a view that spoken language use is an important measure to differentiate differences vs. disability. But does reliance on spoken language use offer enough to make such a differentiation? Are their other facets of autism (or combinations of facets) which could better reflect any difference vs. disability arguments?

Personally, I'm not inclined to believe that there is a personality variant vs. definite disability debate to be had when it comes to autism. Formal receipt of a diagnosis is based not only on the presentation of autistic features or traits but also that such traits "cause clinically significant impairment in social, occupational, or other important areas of current functioning." If one was to say that some autism is just a personality variation, it could for example, dissipate the meaning of autism and the supports that are required. The risk of 'diluting' an important message about the need for those services and resources to ensure that people across the autism spectrum and their loved ones get the help and support they need to have a good quality of life is not a risk, in my view, worth taking.

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[1] Dell'Osso L. et al. Correlates of autistic traits among patients with borderline personality disorder. Comprehensive Psychiatry. 2018; 83: 7-11.

[2] den Houting J. Neurodiversity: An insider's perspective. Autism. 2019 Feb;23(2):271-273.

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Why the words "every one of us hovers somewhere along the autistic spectrum" are so dangerous

The Guardian, Friday 26th April 2019

Today I offer another post based on a newspaper report, as Greta Thunberg and her autism diagnosis continue to generate debate (see here).

This time around the report (letter) in question (see here) titled "Autism and Asperger’s are useless diagnostic labels" is the focus, and, in my opinion, quite a dangerous quote included in the text: "... every one of us hovers somewhere along the autistic spectrum."

Why is it so dangerous to imply that the general population is just a (hovering) footstep away from autism spectrum you might ask? Well, I don't think anyone would disagree with the idea that the behaviours noted in autism aren't something that's just magically present in those diagnosed. Such behaviours can be seen in various other states or conditions and/or across various different times of life and maturation. The thing that makes the presentation of such behaviours so distinct and worthy of a diagnosis of autism is the frequency and intensity of such behaviours and importantly, the way they significantly impinge on functioning and daily life. In that respect, yes, autistic behaviours are part of the complex and intricate tapestry of life. But the (sustained) frequency and impact of such behaviours distinguish autism from not-autism.

In such a context then, the idea that everyone hovers along the autism spectrum is a misnomer. It conflates the 'autistic behaviours are part of the complex and intricate tapestry of life' idea with the important reasons why an autism diagnosis is given. This is dangerous because it has the potential to belittle a diagnosis of autism and what it means to those in receipt of such a diagnosis; often a diagnosis that as taken months/years to finally receive. Indeed some people have suggested that the claim that 'everyone is on the autism spectrum' is an "absolute sin"...

It's also dangerous because such thinking opens the door to other things like the self-diagnosis of autism. I've talked about self-diagnosis quite a bit on this blog (see here and see here) and how, self-realisation is often an important (nay, crucial) step to getting an autism diagnosis for many. When however such self-realisation turns to self-identification and/or self-diagnosis on the basis of various 'are you autistic?' screens available on the Internet and beyond (see here), the side-stepping of formal assessments can lead to problems. Problems that can include potentially missing important conditions/states that seemingly overlap with autism or the presentation of autistic traits (see here and see here) as well as also skewing some important narratives from those who have been formally diagnosed with an autism spectrum disorder and their experiences.

I know some people disagree with such a position. Some people think that the diagnostic criteria for autism are too stringent, too medically focused, or access to formal assessment/diagnostic services is too restricted and costly. I don't disagree that we need to do more to 'fill a gap' and ensure that those who might fulfil the diagnostic criteria (including the "significantly impinge on functioning and daily life" bit) should have access to the relevant professional assessment services. But that doesn't mean that anyone and everyone can or should just publicly label themselves as autistic in the meantime.

And finally, as we're learning from the evolution of the neurodiversity movement, autism is still very much to be seen as a disability (see here). So another possible implication of the "every one of us hovers somewhere along the autistic spectrum" sentiment is that we are all somehow 'disabled' by our hovering along the autism spectrum. This is frankly a ridiculous suggestion and, continuing the theme of how dangerous such a sentiment is, could have some really serious consequences for the provision of resources and services for those who are genuinely disabled by facets of their autism. Words matter.

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"Having accessed treatment was associated with reporting lower levels of work/school attendance"

I have to admit that I did a bit of a double-take when I came across the quote titling this post - "Having accessed treatment was associated with reporting lower levels of work/school attendance" - in the paper published by Sheila Ali and colleagues [1] (open-access available here).

The findings came from a study that set out to investigate the "factors associated with fatigue, disability and school attendance in young people with severe CFS/ME [chronic fatigue syndrome/myalgic encephalomyelitis]." Part of the study also looked (in a preliminary manner) at whether some of the therapeutic options offered 'for ME/CFS' were up to scratch based on participants' responses and views.

"Questionnaire data were collected in two waves: at baseline (T1), and at follow-up (T2), which was 3–9 months later" as such data were collected from 51 young people "required to have a self-reported diagnosis of CFS/ME." Researchers mention how they focused on participants with "severe CFS" as measured by a self-report 'functional ability scale'. That being said, recruitment phases for the Ali study were not uniform, as two different thresholds for severity were eventually used in different recruitment phases.

No mind, Ali et al asked participants to complete various questionnaires around things like mobility, meaningful education and/or work (including attendance), and level of fatigue. Bearing in mind the use of words like 'fear avoidance' in the Ali paper (possibly denoting the biopsychosocial (BPS) 'sway' of some of the authors), various 'psychological' concepts were also included for study. The data were collated and analysed.

Results: although data for 51 participants were eventually analysed, nearly 400 young people were sent a letter inviting them to participate in the Ali study. Only 56 responses (consent forms and questionnaires) were eventually received which, even taking into account the 'severe CFS' inclusion criteria, represents a pretty low study turnout. This seems to follow a trend among certain types of study of ME/CFS (see here) which is starting to become quite noticeable.

"Thirty-seven (72.5%) participants reported using assistive equipment such as crutches, walking frames, ramps, stair-lifts and shower chairs. Thirty-three participants (64.7%) reported that they used a wheelchair. Nine participants (17.6%) reported that they were bed-bound." Contained within those sentences is the real cost of ME/CFS to something like mobility. On top of all that, researchers also observed that approaching 90% of their cohort were also taking some form of medication (I assume pertinent to things like mobility issues and beyond). In terms of how things like mobility issues impacted on participation in 'meaningful' education and/or work, we are told that only a quarter of participants "had been able to attend school, college or work in the past year." That's 'in the past year'.

Then back to those 'treatments' and their effects. So: "Although this was a naturalistic study and not an evaluation of treatment, it is notable that the majority of participants reported that they had accessed some form of treatment, and yet the mean scores for fatigue and social functioning had not changed considerably by T2." What sorts of treatments had they tried I hear you ask? Well, table 1 (see here) provides some details. The most popular treatment 'accessed' was "CBT, GET or both with at least one other treatment" closely followed by "CBT, GET or both." Allied to other independent data suggesting that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are failing many patients with ME/CFS (see here and see here and see here), and the case grows ever stronger for new treatment directions to be pursued. Such research directions should perhaps also be minus words like 'fear avoidance' or other psychobabble inclinations that have pervaded ME/CFS thought down the years. Indeed, one has to ask who would advocate for treatments that are seemingly at best ineffective and at worst downright detrimental to the patient group who are 'accessing' them?

There are some other points noted in the Ali paper including things like how "low mood is a consequence of having CFS/ME" and how "symptoms of CFS/ME and levels of functioning can fluctuate over time." These follow similar sentiments expressed in other research (see here and see here) along the lines of CFS/ME being very much a real physical illness with both physical and psychological effects.

There are some obvious caveats to mention about the Ali study, specifically around the sole use of questionnaires without any other 'actigraphic' form of inquiry (to measure something like activity levels), the representativeness of results, and the reliance on self-report when it came to diagnoses. Although I've also been pretty harsh on the effectiveness of the treatment options accessed, I will direct you to some author comments on this issue and how "the effects of treatment would not be seen within such a short period of time." I'm not too sure about such sentiments but, in the interests of balance, give them airtime in this study write-up.

Despite all that, the Ali findings add further to our knowledge about ME/CFS in young adults. They demonstrate how 'life-destroying' the illness is (are) and can be, and what that means to those who suffer with it (them). They also add to the multiple voices - research and patient voices - demanding a greater clinical focus on ME/CFS, and how objective, biological science in particular, needs to be front-and-centre of any new direction. But I'll also reiterate that any new focus and new direction needs to be minus the psychobabble; indeed it may be unethical not to [2]...

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[1] Ali S. et al. Psychological and demographic factors associated with fatigue and social adjustment in young people with severe chronic fatigue syndrome/myalgic encephalomyelitis: a preliminary mixed-methods study. J Behav Med. 2019 Jan 25.

[2] O'Leary D. et al. Ethical classification of ME/CFS in the United Kingdom. Bioethics. 2019 Feb 8.

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"The neurodiversity movement is, arguably, still in its infancy"

The quote heading this post - "The neurodiversity movement is, arguably, still in its infancy" - comes from the paper published by Jacquiline den Houting [1] discussing the idea / concept / movement known as neurodiversity as applied to autism.

I wanted to talk about this article because it's fair to say that neurodiversity, with specific reference to the label / diagnosis / condition that is autism, has been a source of quite a bit of discussion down the years (see here for example) and probably will continue to be so for a while yet. Even by posting on this topic and perhaps offering something just a little bit critical of some facets of neurodiversity, one runs the risk that someone, somewhere will take offence, such is the strength of feeling about this topic. But being "still in it's infancy" perhaps means that the idea of neurodiversity is still being properly formulated and adapted. And respectful [critical] dialogue is an important part of that development process.

Although there are lots of different interpretations of what neurodiversity [currently] is and what it includes, I would probably suggest that the ideas that (a) all brains (and bodies) are different and (b) diagnostic labels such as autism "are the result of normal, natural variation in the human genome" are key to any description. It's also worth pointing out that under neurodiversity "autism is conceptualised using the social model of disability" as an alternative to the medical model. The difference between the models lies in 'where disability comes from'. The medical model focuses on the individual; the social model focuses on society at large.

den Houting set out "to debunk some of the misunderstandings of the neurodiversity movement" in her writings. The three areas that she focuses on are: "that the neurodiversity paradigm frames autism as a difference and a cultural identity, but not a disability... that the neurodiversity paradigm can only be appropriately applied to autistic people with lower support needs... that framing autism through the neurodiversity paradigm implies that autistic people do not require support, as neurodiversity would supposedly have us believe that autism is ‘just a natural variation’." She provides some important responses to those 'misunderstandings' which are truly refreshing to see. These include the ideas that "the social model of disability is not a panacea for all disabilities" and some additional commentary on the problematic use of functioning labels applied to autism (see here for other discussions on this topic). Throughout, the focus is on how "the insiders’ perspective on the neurodiversity paradigm" is important, and needs to be more readily incorporated into autism research and practice (see here and see here), also perhaps added to other important voices (see here).

Without trying to ruffle any feathers and importantly, accepting that people are entitled to their own viewpoints about autism, particularly those who are themselves autistic, I still have further questions to ask about the neurodiversity paradigm and some possible limitations of the current version of it in the context of autism.

So first, the social model of disability is important. As per one example I found about how society still does create barriers to disabled people (wheelchair users and stairs is the classic example), there is merit in saying that society is not always as inclusive as it should be. Society needs to do a lot more, particularly where disability might not be so obviously present. I am however always struck by the neurodiversity idea that the social model of disability should serve as a total replacement of the medical model of disability. Can the two models not seemingly co-exist? Is it not possible for example, that someone can be both disabled by autism, or facets of autism, and also be disabled by the way that society 'responds' to an autistic person / person with autism? If I take the wheelchair user example again and apply it to this 'shared' model, would it not be sensible to suggest that if there are the means to empower a person not to have to use a wheelchair all the time, they could be utilised alongside also providing a ramp access if and when it is needed? Or should an important intervention that could potentially help someone to walk unaided for example, be discarded just to fit a sociological narrative? Now apply similar sentiments to autism and say someone who has crushing anxiety as a prominent feature (see here) where there may be options worth considering for some (see here). And just before you say anxiety is not a core feature of autism, I'd be minded to suggest that it may very well be intricately connected to core autistic features (see here and see here)...

Related to that last thread are the discussions about autism and natural genetic variation and how this plays out in relation to support and intervention, particularly when: "Conflict between critics and neurodiversity advocates in the debate over support and interventions tends to centre on the end goal of such interventions." den Houting uses some pretty sweeping language when concluding that: "Critics often (either explicitly or implicitly) promote reducing or eliminating autistic traits as a key priority of intervention." Such a line of thought ties into the idea of autistic identity that has followed neurodiversity; highlighting how autism is often seen as something 'central' to a person and perhaps impacts on how that person wants to be perceived by the world at large (see here). The logical notion is that any intervention to try and *change* autism represents an attempt to try and change something fundamental about a person.

Although I can't speak for every person who has ever or continues to involve themselves in autism research, particularly autism research geared toward intervention, I've often thought of the idea of 'eliminating autistic traits' as a rather sweeping generalisation. Most researchers understand that (a) there is no behaviour seen in autism that is not potentially seen in some measure in the 'not-autism' population at some point during a lifetime, and (b) the diagnosis of autism relies on the fact that autistic behaviours are present to an extent that they "cause clinically significant impairment in social, occupational, or other important areas of current functioning." I might add that point (a) is NOT in any way supporting throwaway phrases like 'we're all a little but autistic'. If aspects of autism are however so 'clinically significantly' impairing, I don't see why the choice to potentially reduce or alleviate certain issues shouldn't be offered if and when a suitable - safe and effective - intervention becomes available. Not to do so would perhaps constitute discrimination and represent a further inequality. Bear also in mind that a diagnosis of autism rarely exists in some sort of diagnostic vacuum (see here). As I've already mentioned, the presentation of certain 'comorbid' conditions may very well be intricately *related* to certain core facets of autism (see here and see here) as per what has been noted in the peer-reviewed literature on rare genetic conditions manifesting autism plus other issues (see here for one example). With increasing recognition of these points, the discussions about the ethics of 'reducing autistic traits' turn out to be a little more complicated than one might originally think. I might also add at this point that neurodiversity doesn't seem to much like the ideas that not all autism is wholly genetic (see here) and/or present from birth or before (see here).

I'd suggest that the authors call for "services aimed at improving subjective quality of life and well-being while respecting and preserving autistic ways of being" is also not at odds with other research and practice aims and objectives. It's perfectly acceptable to look at how autistic traits and features might positively impact on a person and try and disentangle them from other traits that might be rather more disabling and could perhaps be amenable to some sort of intervention if wanted/required. Indeed, with initiatives such as the development of the ICF cores sets for autism, there is already a potential plan of action under such a heading (see here). And yes, the words "provided at the request and with the consent of the autistic person in question" are absolutely to be respected.

I have to say that in all I've read about neurodiversity and autism down the years, the key themes that jump out to me about why this idea is so readily acceptable to so many are the concepts of respect and belonging. Respect as in ensuring that a person is valued as a person and not some sort of clinical entity or diagnosis to be 'researched' and belonging insofar as neurodiversity offering an identity and perhaps even kinship for many people with many different 'medicalised' labels. It's impossible to know the personal histories and circumstances of everyone who subscribes to the concept of neurodiversity (whatever they see this as), but after hearing many challenging stories of childhood and early adulthood adversities faced by those on the autism spectrum, finding some sort of 'belonging' would seem to be an important part of the draw of neurodiversity (and probably why neurodivesity flourishes on social media platforms). Indeed as the author herself once said in an interview: 'Find your tribe'. From those points of view, neurodiversity does offer something valid to autism and beyond.

I can't however brush over certain aspects of neurodiversity including the wholly social model view of disability that it strives to adopt. It's quite evident that the obstacles posed by society do impact people, but probably not with any less of an effect on some autistic people as their autistic features do. I speak particularly of those who present with significant difficulties that mean a life of constant care and supervision; something perhaps described as level 3 in the latest DSM-5 criteria for autism (see here). Indeed, one could argue that where autism for example, means a lifetime of parental guardianship and/or residential care and support, society is generally at its most 'ableing' in providing such services and support. Not always, and improvements are always required (see here), but generally speaking society is not the universally disabling monster that some would have it labelled as.

Finally I can't mention neurodiversity without also mentioning an unfortunate word: 'neurotypical' also known as NT. As I've said before, the misnomer known as 'neurotypical' (see here), thankfully only mentioned twice in the den Houting paper, is something that seems to be synonymous with neurodiversity, despite being a tad counter-intuitive [2] (typicality in diversity?). If neurodiversity wants to perhaps evolve further, distancing itself from the nonsense that there is such a thing as 'neurotypical' within the vast ever-changing individual complexity of the brain and central nervous system (CNS) is perhaps as a good a first step as any to take.

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[1] den Houting J. Neurodiversity: An insider’s perspective. Autism. 2018. Dec 17.

[2] Armstrong T. The myth of the normal brain: embracing neurodiversity. AMA J Ethics. 2015 Apr 1;17(4):348-52.

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The [estimated] global prevalence of schizophrenia in 2016... 0.28%

The findings reported by Fiona Charlson and colleagues [1] looking at the "GBD [global burden of disease] 2016 estimates of schizophrenia prevalence and burden of disease with disaggregation by age, sex, year, and for all countries" provide the brief blogging fodder today.

As per the title of this post, when all the data were captured (from a "total of 129 individual data sources") and numbers crunched, the "global age-standardized point prevalence of schizophrenia in 2016 was estimated to be 0.28%."

Authors talk about schizophrenia as a "low prevalence disorder" highlighting also how there were no sex differences noted and how: "Age-standardized point prevalence rates did not vary widely across countries or regions." Schizophrenia it appears, does not care if you are a man or a woman or where you live. What it does seem to do, quite generally, is affect your quality of life and other life chances, as per another quote from the Charlson findings: "Schizophrenia contributes 13.4... million years of life lived with disability to burden of disease globally." Oh, and it appears to be increasing in frequency too: "Globally, prevalent cases rose from 13.1... million in 1990 to 20.9... million cases in 2016."

I personally, found the Charlson estimate - 0.28% - to be lower than I would have expected. Having talked for example, about schizophrenia prevalence rates in specific countries on this blog (see here) and mention of figures such as 0.83% [2], the global figure seems someway behind. Interestingly also, in the United States, there has been some 'discussion' about the revision of the prevalence estimates of schizophrenia there too (see here), where a quite long-standing 1.1% estimate - "1-year prevalence of schizophrenia in adults in the US" - was recently revised down to 0.3% (a figure not a million miles away from the Charlson estimate).

I guess, there's more to do when it comes to the establishing a precise prevalence of schizophrenia...

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[1] Charlson FJ. et al. Global Epidemiology and Burden of Schizophrenia: Findings From the Global Burden of Disease Study 2016. Schizophr Bull. 2018 May 12.

[2] Chan KY. et al. Prevalence of schizophrenia in China between 1990 and 2010. Journal of Global Health. 2015;5(1):010410.

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Who speaks for who in relation to autism?

I'm probably stirring up a hornet's nest by writing this post around the findings reported by Karin Jongsma and colleagues [1] touching on the subject of 'who speaks for who' in autism advocacy, but thought it an important topic to approach. Not least because in some quarters, there are some quite heated discussions being had (mainly, and unsurprisingly, across social media and related platforms) concerning representation across various organisations and initiatives with a focus on autism. The question at the heart of such debates is: 'Who should be the primary voice(s)?' when it comes to things like decision-making about research and policy in the context of autism, both at an individual and group level? It's not a new debate by any means and such discussions will likely be part of the autism landscape forever more...

So:

"The inclusion of people with a 'neuro-psychiatric' condition poses a particular challenge for the organizational processes and political representation of such collectives" was the starting point for Jongsma et al. I'm not very philosophically literate so can't really tell you too much about the use of 'epistemic injustice' as a framework by Jongsma, outside of it being an idea that includes 'testimonial injustice' meaning "prejudices that cause one to "give a deflated level of credibility to a speaker's word"." 

The authors conducted interviews with a number of patient organisation (PO) representatives and concluded that: "persistent stereotypes hamper the inclusion of affected members both within POs and on the health political level." Further: "Being affected causes distrust in having the 'capacity to know' in a two-fold way; it is assumed that those who can represent themselves are "not affected enough" to present valuable insights into the condition and those who have difficulties to express themselves due to their condition are excluded because of their affectedness."

That last sentence kinda hits the nail slap-bang on the head when it comes to many of the discussions around 'who speaks for who' in the context of autism. Remembering that autism is about as heterogeneous as it comes with regards to the huge range of abilities and disabilities covered under the spectrum label, many, if not all, arguments about representation stem from perspectives on whether the so-called 'able' are able/allowed/qualified to speak for the so-called 'not so able' and the apparent lack of the 'not so able' to have an appropriate voice, thus relying on proxy voices such as their parents and/or primary caregivers. The bold emphasis was added by me just in case you ask. Such issues are also positioned in the context of tenets such as: 'if you've met one person with autism, you've met one autistic person' (or words to that effect) and older adages about 'mother (or father) knowing [their child] best'. The fact that Jongsma et al also included dementia in their study - another condition/label/state where ability and disability is pretty heterogeneous - is also worth noting.

I'd advance the idea that there is no right or wrong answer in the debate on who speaks for who when it comes to autism. Certainly, further grand sweeping generalisations in relation to autism are not required. The moves to encourage greater participation by #actuallyautistic people are to be welcomed and reflect many factors such as the rise and rise of numbers of people being diagnosed with autism (some rather late in life) and how again, social media in particular, is providing an important tool to voice wants, needs, hopes, fears, concerns, vision and lots more when it comes to the lives of those on the autism spectrum. Various different sorts of group identities are emerging/have emerged as many, particularly adults with autism / autistic adults (see here), have come together. Sometimes this is under the banner of neurodiversity and the principles which it includes; other times not, or with more specific issues in mind. Without getting too 'reflective' on the topic, the autism/autistic group identities emerging probably also help fill an important gap, taking into account all the chatter down the years about how loneliness and isolation are very much over-represented and onward how the desire to 'belong' has been too long neglected in the context of autism.

It's also fair to say that not everyone diagnosed on the autism spectrum is 'part of the conversation' bearing in mind the 'nothing about us without us' mantra. There are many children and adults with autism for whom such debates on advocacy are probably not as big a concern as overcoming various day-to-day issues; be they based on the effects of core autism presentation or other important comorbidities such as epilepsy or gastrointestinal (GI) issues. For many of this group, their voice is their parents and/or primary caregivers and will be for the rest of their lives. By saying all that I'm not falling into the whole 'high' and 'low' functioning narrative about 'who's the more disabled'. I'm simply acknowledging that some people on the autism spectrum can't and probably won't ever participate in discussions about 'who speaks for them' and therefore their own voices are heard only through their parents/caregivers, siblings or significant others. I know some people will say that we aren't trying hard enough to give this section of the autism spectrum a voice, but right or wrong, that's where we currently stand.

What can be done to improve the situation and perhaps bridge any gulf between voices from the spectrum and proxy voices from the spectrum? Well, there's no easy fix because yet again, heterogeneity rules. It would be unwise to assume that every actually autistic adult who can vocalise or communicate wants the same thing for themselves or any group they feel allied to, just as any sweeping generalisations that every non-communicating person with autism (I don't know how else to describe this group) or parent/primary caregiver wants the same thing are likely untrue. I think this is an important point to raise particularly when for example, the social model of disability - "disability is caused by the way society is organised, rather than by a person’s impairment or difference" - can too often be assumed to be a significant part of the vocal autism agenda, seemingly at the expense of acknowledging some very real disabilities. It's not, for example, difficult to imagine how such an extreme sentiment might sound to the parent or caregiver of a child/adult who requires significant day-to-day care and is very much disabled as a result of their autism and the issues it brings, irrespective of societal organisation. This also goes for those 'autism as a superpower' and related statement(s) which have been mentioned down the years. How such sweeping generalisations, seemingly contrary to the diagnostic tenets of autism, may well reflect individual perceptions and abilities of autism, but often do very little to forward the agenda of those severely impacted by their autism and their representation (including in the lay media).

There are substantial benefits to be had from listening to the many voices from the autism spectrum particularly when it comes to outcomes and events that will likely impact them as individuals and/or other groups on the spectrum. Similar sentiments are being discussed with other labels in mind too. I note for example, there are quite a few autistic voices that provide both informative and compassionate 'middle-ground' on many topics related to the details included in this post and the Jongsma paper. Importantly too that some are also not afraid to critique some of the tenets of neurodiversity (and by virtue, the misnomer of 'neurotypical' that has seemingly pervaded autism science and practice). These are important voices not just because of the accounts and experiences they provide, but also because theirs provides a hint of what challenges/successes might be 'more likely to occur' when a person is diagnosed with autism. Further, they do to some extent, provide an opportunity to positively act on such issues for the benefit of the person themselves and others who may not be in such a fortunate [communicative] position.

But also there is no reason why autistic voices cannot be complemented by hearing the equally important messages that parents and primary caregivers - the people who raise and mould children - can bring to the discussion table too. This also includes the 'teachings' of a rapidly emerging group who offer a really unique perspective: the rise and rise of autistic parents raising children with autism.

I suppose the bottom line is that everyone deserves to be heard no matter what section of the autism community they are allied to, and autism research and practice is all the richer for have such a diverse set of voices on the topic of autism. But this does not mean that conflict(s) are going to be so easily solved given the multitude of opinions, viewpoints and experiences included with autism in mind. How, the very individual nature of autism, is probably never going to lend itself particularly well to favouring one specific viewpoint over any others...

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[1] Jongsma K. et al. Epistemic injustice in dementia and autism patient organizations - an empirical analysis. AJOB Empir Bioeth. 2017 Nov 8:0.

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"there is no single way for a brain to be normal" (or how 'neurotypical' is a nonsense)

I'm not usually so forthright with my posts on this blog, but today I'm being a little more bullish as I talk about an editorial from Simon Baron-Cohen [1] titled: "Neurodiversity – a revolutionary concept for autism and psychiatry."

The crux of the SBC paper is the suggestion that use of the term 'disorder' specifically with autism in mind might have certain connotations - "Disorder should be used when there is nothing positive about the condition" - and until the "biomedical mechanistic cause of a disorder becomes known" some thought should go into the way autism for example, is described.

The author seems to come down on something between 'difference' and 'disability' as being valid replacements, bearing in mind the wide - very wide - heterogeneity that is the autism spectrum and the fact that 'disorder' is still very prominent in the formal clinical descriptions of autism and related diagnoses (see here). Indeed on the topic of 'biomedical mechanistic causes' and [some] autism, well, there is already some evidence for this (see here)...

Personally, I don't want to get involved in such disorder/difference debates. I say this on the basis that (a) people have their own ideas, descriptions and motivations for talking about what autism is and isn't to them (and who I am to question them and their views) and (b) from a research and clinical point of view, such linguistic differences make little difference when it comes to whether someone does or does not reach critical cut-off points for being on the autism spectrum and the subsequent help and support required. These are cultural issues not fundamental research or clinical ones (although I daresay some people would argue against that last point).

What I do however want to mention about the Baron-Cohen article is that specific sentence described in the title of this post - "there is no single way for a brain to be normal" - in relation to neurodiversity [2] and how said phrase helps dismantle a problematic term present in various autism circles: neurotypical (NT).

I see the word neurotypical (NT) banded about a lot these days including in the peer-reviewed domain. I assume from the name that the term describes 'others' who within the vast spectrum of diversity - neuro and otherwise - are, in relation to autism, not positioned on the autism spectrum. It's basically an 'us-and-them' term, which means not-autism (or other condition where similarly applied).

The problem I have with this term relates to the questions: what exactly is neurotypical? and who actually falls under such a description?

OK, we have the first bit - neuro - which is also used/misused a lot these days (together with some scepticism) I assume referring to the brain. Autism is often described in terms of the brain (structure, connectivity, 'wiring') as mentioned in the Baron-Cohen text, with some groups even talking about the possibility of an 'autistic brain' (see here). More precisely 'neuro' probably better describes the nervous system so one might instead look to the term 'autistic nervous system' as being more accurate (bearing in mind the brain is but one thinking organ in the body!). The second part - 'typical' - on it's own means just that: classic, quintessential, representative. Put them both together and the suggestion is that there is an 'average, representative brain / nervous system' in the population that is distinct from the 'autistic brain / nervous system'.

Why is this problematic? Well, this is where the concept of 'identity' has I think perhaps overstretched itself.

The 'autistic brain'? Bullshit (pardon my language). As I've said before on this blog, there is nothing in the peer-reviewed science literature to yet say that the brains / nervous system of everyone diagnosed as being on the autism spectrum are in any way universally different from those not reaching thresholds for the autism spectrum (see here). Nothing. Not one article. Indeed, with the greater recognition that autism is probably a plural condition covered by a singular label (see here), the likelihood that something / anything will universally define the 'autistic brain' is becoming even more distant. Y'know, much like the fading concept of an autistic gene that's taken so long to consign to the research dustbin/trashcan. I say all this even before we start to add-in the idea that autism rarely exists in some sort of diagnostic vacuum (see here) in these days of ESSENCE (see here).

OK, you might say that 'typical' could be stretched to include a wider spectrum of brains / functioning / thinking rather than just one singular thing? Well, that's true but here's another issue: at what point does 'typical' then turn into 'atypical'? The inference is that alongside the neurotypical there is something akin to the neuroatypical. Where are these boundaries of neurotypical and neuroatypical? Do the boundaries shudder to an abrupt halt the moment cut-off points for a diagnosis of autism are reached or surpassed? Does this also mean that other labels such as attention-deficit hyperactivity disorder (ADHD) are also outside of the term neurotypical? Really? On what evidence?

Then also there are the various observations that the presentation(s) of autism - the symptoms / characteristics / label - might actually be quite fluid across different people according to variables such as age or environment and how that further complicates the neurotypical concept. I've talked for example, before about how something like diagnostic stability is perhaps not as stable as many people might think when it comes to some autism (see here) and indeed, in relation to other over-represented comorbidity too (see here). Does this mean that those for example, currently not fulfilling the diagnostic criteria for autism but having previously done so at some previous point have somehow 'transitioned' from autism to neurotypical? Again, really? On what evidence?

I could go on (and on) about the other problems with the concept of neurotypical (e.g. the problem of objectively measuring thinking styles, etc) but I won't. All I'll say is that in the age of 'show me the evidence' please do show me the evidence - any evidence - that neurotypical is anything other than an alternative phrase to 'not-autism' or at least not meeting the current cut-off thresholds for a diagnosis of autism or related label.

And, on the basis of the points I've raised in today's post, how then can science continue to justify it's use when the description of neurotypical is, by all accounts, a nonsense?

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[1] Baron-Cohen S. Editorial Perspective: Neurodiversity - a revolutionary concept for autism and psychiatry. J Child Psychol Psychiatry. 2017 Jun;58(6):744-747.

[2] Armstrong T. The myth of the normal brain: embracing neurodiversity. AMA J Ethics. 2015 Apr 1;17(4):348-52.

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Baron-Cohen S (2017). Editorial Perspective: Neurodiversity - a revolutionary concept for autism and psychiatry. Journal of child psychology and psychiatry, and allied disciplines, 58 (6), 744-747 PMID: 28524462

Symptom profiles of chronic fatigue syndrome across borders

To quote from the paper by Maria Zdunek and colleagues [1] (open-access available here): "These findings suggest that there may be important differences in illness characteristics across individuals with CFS [chronic fatigue syndrome] in the US [United States] and the UK [United Kingdom], and this has implications for the comparability of research findings across these two countries."

Looking at how symptom profiles and the "functional differences experienced by patients with chronic fatigue syndrome (CFS) across cultures" might differ, researchers set about analysing data from two cohorts of participants meeting criteria for CFS as described by the 1994 case definition (see here).

Two cohorts, based in the US (n=154) (termed the DePaul sample as a function of their previous participation in studies at DePaul University) and in the UK (n=73) (clinically referred to the RVI in Newcastle-Upon-Tyne), completed various measures of functioning related specifically to fatigue symptoms and also more general health. Results were then compared across the groups.

Quite a few group differences were noted across the study instruments used. So: "The UK sample was significantly more impaired with regard to role emotional and mental health functioning, multiple symptoms, experienced a more gradual onset of illness, and believed the cause of the illness to be both physical and psychological." In contrast: "The US sample experienced more sudden onset of illness, more frequently believed their illness to be physical, and more often were on disability."

Digging into the data with a little more detail, authors reported that quite a few more people in the DePaul sample were likely to look to the cause of their symptoms as being 'definitely physical' over the UK sample results (78% vs. 57%). Quite a few more participants in the US sample were also more likely to have been diagnosed and/or treated for conditions like fibromyalgia compared to the UK sample. What this could imply outside of more physical factors indeed being linked to symptom onset in the US sample, is something of a greater tendency to medicalise CFS in this group rather than explain it in terms of psychological and physical factors mixed together. I wonder if this might hark back to the unfortunate 'tradition' here in Blighty (UK) of viewing CFS/ME as more of a psychological issue than a physical condition and the various controversy that has surrounded this view in recent times (see here). The authors likewise suggest that: "those who believe their illness is partly psychological may have had previous experience with a psychological illness such as depression, which may influence their perception of the illness." Indeed.

Following on: "These results suggest there may be differences between the UK and US in relation to impairment in functioning, where the UK is more impaired in terms of mental health." The idea that within the constellation of symptoms that surround ME/CFS there may be a mix of physical and psychological aspects is not a new one. As per the previous paragraph, the perception of medical illness may indeed play a role in how one might define the illness. That being said, I'm generally favouring a model whereby the psychological effects noted in CFS are indeed 'effects' that stem from the initial physical/somatic nature of the condition as per other ramblings on this topic (see here). That for example, health-related quality of life is pretty much at the bottom of rankings compared with other conditions (see here) and combined with the impact of various physical ailments not normally noted in the diagnostic criteria as they stand for CFS (see here) and it's little wonder that emotional and mental health also suffer as per other research on psychiatric comorbidity accompanying such somatic complaints (see here). I don't say this to belittle the mental health aspect to CFS but rather to emphasise the continued growth of the view that CFS/ME represent a very real 'medical' condition(s) requiring 'medical' treatment/intervention (see here). Psychological intervention has some way to go in this area [2] despite other results [3] (and their criticism).

The Zdunek study is by no means perfect in terms of applicability to all ME/CFS in either the US or UK so one has to be a little cautious about extrapolating results. That the label itself is undergoing a bit of an overhaul in recent times (see here) is perhaps moving the description of the condition (at least in the US) into a more medical domain matched by the considerable efforts being put into treating it as a physical condition (see here for example). What the Zdunek study does imply, is that alongside such medical research, quite a bit more might need to be done to focus views and opinions on CFS according to geography as a physical condition in both patient and professional circles.

Debates continue in CFS/ME realms and indeed, one of the co-authors on the Zdunek paper is very much part of that debate...

To close, a Dalek relaxation tape anyone?

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[1] Zdunek M. et al. A Cross Cultural Comparison of Disability and Symptomatology Associated with CFS. Int J Psychol Behav Sci. 2015;5(2):98-107.

[2] Loades M. et al. he Cognitive Behavioral Treatment of Depression and Low Self-Esteem in the Context of Pediatric Chronic Fatigue Syndrome (CFS/ME): A Case Study. J Child Adolesc Psychiatr Nurs. 2015 Oct 16.

[3] Sharpe M. et al. Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial. Lancet Psychiatry. 2015 Oct 27. pii: S2215-0366(15)00317-X.

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Zdunek M, Jason LA, Evans M, Jantke R, & Newton JL (2015). A Cross Cultural Comparison of Disability and Symptomatology Associated with CFS. International journal of psychology and behavioral sciences, 5 (2), 98-107 PMID: 26478826

Views on autism from an "unaffected sibling"

It was a bit of a breath of fresh air to read the paper by Lauren Singer [1] (open-access) published in the journal Molecular Autism recently. Detailing the personal experiences of a sibling with a sister with autism who has "gone to walks, raised money via lemonade stands, volunteered in respite programs for families with kids with autism, and participated in autism research studies at the Yale Child Study Center", her very personal account is an important read in amongst the huge peer-reviewed science literature on the topic.

Focused specifically on the growing research interest on how autism manifests across the genders [2], the author discusses various themes that have emerged in this area including the idea of a female protective effect in light of the gender/sex disparity noted in rates of autism (see here). Although an interesting hypothesis [3] the suggestion that girls may be somehow "require greater etiologic load to manifest the same degree of impairment as males" is not however without its criticisms (see here).

Perhaps of greater importance are some valuable points raised by the author on a more personal level. So: "I have experienced firsthand the anguish autism inflicts on the entire family." I appreciate that that last sentence probably does not reflect every families experience of autism and might run counter to some viewpoints included in the debate about disability vs. difference and a focus on 'deficits over strengths', but it is an important sentence to highlight. Not least because Ms. Singer's experiences of growing up with a sister who by all accounts, is 'disabled' by autism and who was subsequently "moved into residential placement" on account of her behaviour posing a risk to her safety is a viewpoint that can sometimes get rather lost in the very heterogeneous chatter about autism. Similar things have also been mentioned in the popular press recently. Further: "Living with Jodie, and now having to live without her, has made me desperate for answers" similarly reflects the realities of living apart from a cherished loved one and the anguish that can bring.

"I also believe that scientists can enhance their careers by leaving the lab once in a while to interact with real people with autism." Without painting every autism researcher with the same brush, the idea that people with autism are people first (yes, I know this runs counter to some of the discussions on the ownership of the autism label) and that autism is very much more than just the sum of a triad/dyad of symptoms, is an important point made here. "Seeing people with autism challenged by daily living skills can make research designed to help them feel much more rewarding" likewise taps into growing calls for a focus on here-and-now research alongside the hows-and-whys research agenda that has prevailed over the years. As a side-note, intervention can mean lots of things, even comparatively simple things [4].

I close with another quote: "My experiences with Jodie and my hopes for her future have inspired me to want to be part of the cutting edge of discovery that will make a difference in the lives of thousands of people." Alongside the idea that families are the 'experts' on their various members, I'd like to think that Ms. Singer's article will be an important call for siblings, other family members and people with autism themselves to become much more engaged in the autism research landscape, and particularly, it's future shaping...

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[1] Singer L. Thoughts about sex and gender differences from the next generation of autism scientists. Mol Autism. 2015; 6:52.

[2] Jamison TR. & Schuttler JO. Examining social competence, self-perception, quality of life, and internalizing and externalizing symptoms in adolescent females with and without autism spectrum disorder: a quantitative design including between-groups and correlational analyses. Mol Autism. 2015 Sep 17;6:53.

[3] Robinson EB. et al. Examining and interpreting the female protective effect against autistic behavior. PNAS. 2013; 110: 5258-5262.

[4] Schmidt L. et al. Psychosocial Functioning and Life Satisfaction in Adults With Autism Spectrum Disorder Without Intellectual Impairment. J Clin Psychol. 2015 Sep 25.

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Singer L (2015). Thoughts about sex and gender differences from the next generation of autism scientists. Molecular autism, 6 PMID: 26388981

UK Millennium Cohort Study: School and the disabled child

Quite recently the BBC News online ran with the headline: "Disabled children's behaviour 'deteriorates at school'". The story revolved around the findings reported by Rebecca Fauth and colleagues [1] (open-access) looking at "the extent to which the associations between disability and behaviour are linked to children’s developmental stage and thus may be ‘grown out of’ as children enter school and move out of the early years". I should add that, at the time of writing, the Fauth paper is described as a 'working paper' and further "Citation of such a paper should account for its provisional character". So noted.

But why Earth, Jor-El? They're primitives...

With apologies for all the quotations included in this entry, participants for this trial were drawn from the UK Millennium Cohort Study (MCS) [2] which has previously reported on the topic of autism [3] - "Pre-diagnostic data showed early health problems differentiated children later diagnosed with autism from non-diagnosed peers" - Mmm.

In the Fauth paper it included over 6000 UK children covering various ages at different times over the course of the study (referred to as 'sweeps'). Children without reported disability were compared against 3 primary groups defined as 'disabled':

• Children with developmental delay (DD) at 9 months of age. This was assessed via "a set of 8 questions... that were taken from the Denver Developmental Screening Test" and "five items from an UK adaptation of the MacArthur Communicative Development Inventories (CDI) were used to identify early communicative gestures".
• Children with a "Long-standing limiting illness [LSLI] at 3, 5 or 7 years". LSLI was defined "if they had an LSLI at one or more of the occasions it was asked between age 3 and age 7" and included various conditions covering 'mental health' and physical health (asthma, type 1 diabetes and vision impairment).
• Children with Special Educational Needs (SEN) at age 7. Those familiar with the UK system will probably already know about SEN, but for those that don't, it covers "those children who need additional support with their learning" (see here). Further: "SEN may relate to learning difficulties or impairments such as hearing loss, ADHD or dyslexia".

Researchers tracked participants looking at various measures covering areas of "children's emotional, relationship and behavioural issues at the ages of three, five and seven" according to the BBC report. Fauth and colleagues list the dependent variables as being derived from "the four ‘problem’ subsets of the parent-reported Strengths and Difficulties Questionnaire (SDQ)". They also took into account various other factors based on family background and constitution, the parent-child relationship (including discipline practices) and child characteristics.

Based on some nifty statistical modelling, the authors reported on a few key points:

• So: "in their early preschool years disabled children do suffer from more challenging expressions of behaviour". 
• With some caveats: "disabled children exhibit a divergent trajectory from the ‘average’ child, showing increases over time in peer problems, hyperactivity and emotional problems, but not for conduct problems".
• Also: "family and individual characteristics that are associated with both disability and behaviour (such as poverty, family structure, cognitive ability and home environment) mediate the effects of disability in these instances".
• The authors talk about sex differences in their results: "overall girls face lower levels of peer, conduct and hyperactivity behavioural problems across the early years than boys". This is perhaps not an unexpected result as any parent with both boys and girls will perhaps tell you. But: "disabled boys consistently demonstrated more hyperactive problems than non disabled boys, and that these differences grew over time for boys with LSLI and SEN". Additionally: "The differences between disabled and non-disabled children is much greater for boys than for girls, and this divergence between disabled and non-disabled boys grows more over time than it does for girls".
• Parenting styles also get a mention in the results: "harsh discipline being consistently associated with higher levels of problem behaviours, and parent-child closeness being linked to lower rates of problem behaviours". With disability in mind however, the authors saw: "very little evidence of parenting moderating the relationship between disability and problem behaviours, either at age 3 or over time".

I should also add that when it came to looking at developmental delay (DD) the authors noted: "the developmental trajectories of children identified as DD did not diverge from those without DD" although measurement of peer and hyperactivity issues for example, did still not 'close the gap' compared with non-DD participants.

The authors conclude: "Child behavioural difficulties can have far reaching consequences and hence, without appropriate support or intervention, young disabled children may face an accumulation of adverse consequences that serve to compromise their well-being in adolescence and adulthood".

I'm sure you can appreciate how important this work is in terms of both how disability impacts on childhood and what strategies might be put in place to reduce some of the more adverse effects of such issues and lessen any inequality as a result. I note for example, that the BBC write-up of this research has given quite a lot of weight with regards to bullying and the notion that schools should adopt "more stringent anti-bullying strategies for those identified as different" as a result of the findings. I would very much agree with this position; with the caveat of ensuring that children with disability are not further plunged into the 'victim' label as a result of any strategies. This can sometimes itself have consequences for things like future independence and self-esteem; thus helping individuals to help themselves - instilling confidence and resilience and building up feelings of self-worth - is another strand to any discussions (and I have a few ideas on that without making any sweeping generalisations). I'm also wondering whether the debate on home-schooling might also come into play here too?

I'd finally also like to pass some comment about the issue of parenting styles discussed in the findings. Although no large effect appeared to be observed from parenting style and problem behaviours in those with disability, the more general association between harsh parenting style and hyperactive behaviours for example, offers a fascinating opportunity and potentially offers some, more general lessons on child development and rearing. I might add that the parenting style - disability non-event - "does not have much role in modifying the specific trajectories of problem behaviours associated with disability" - might also carrying some lessons for particular conditions like autism for example too (see here).

Now, how about looking at other potential mediators of behaviour such as adequate sleep [4], regular exercise and good nutrition [5] (including a possible role for supplementation)? Too much...?

Music to close. Love Me Like You from the Magic Numbers (although my brood prefer their cameo performance in the Harry Hill Movie...)

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[1] Fauth R. et al. Convergence or divergence? A longitudinal analysis of behaviour problems among disabled and non-disabled children aged 3 to 7 in England. Department of Quantitative Social Science. Institute of Education, University of London. Working Paper No. 14-13. Sept 2014.

[2] Connelly R. & Platt L. Cohort Profile: UK Millennium Cohort Study (MCS). Int J Epidemiol. 2014 Feb 17.

[3] Dillenburger K. et al. he Millennium child with autism: Early childhood trajectories for health, education and economic wellbeing. Dev Neurorehabil. 2014 Oct 7:1-10.

[4] Lee HK. et al. Sleep and cognitive problems in patients with attention-deficit hyperactivity disorder. Neuropsychiatr Dis Treat. 2014 Sep 17;10:1799-805.

[5] Bellisle F. Effects of diet on behaviour and cognition in children. Br J Nutr. 2004 Oct;92 Suppl 2:S227-32.

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Connelly R, & Platt L (2014). Cohort Profile: UK Millennium Cohort Study (MCS). International journal of epidemiology PMID: 24550246