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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"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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Knowledge, attitude and stigma in relation to autism

A mash-up post for you today, as two papers are brought to the blogging table. The first paper by Sheri Stronach and colleagues [1] set out to "explore autism understanding and stigma among university students, and general community members recruited at a state fair." The second paper by Eilidh Cage and colleagues [2] wanted to examine "knowledge, openness and dehumanising attitudes of non-autistic people towards autistic people." Although the language used in the two papers is slightly different (i.e. 'dehumanising attitudes') the goals were pretty much the same: how much does the general public understand about autism and what are the perceptions of the label?

Stronach et al reported results based on the completion of the Autism Stigma and Knowledge Questionnaire (ASK-Q) by almost 500 people. Their combined results suggested that their cohort showed: "relatively high levels of autism knowledge and low levels of stigma." Ergo, awareness of autism seemed to be quite good and people were generally very accepting of autistic people.

Cage et al reported results based on a slightly smaller sample, albeit including over 350 participants. We are told that participants "completed a survey measuring autism openness, knowledge and experience, along with a measure of dehumanisation." Their results indicated that "knowledge of autism was comparable to past research" and that "females were more open towards autism." But things were not completely rosy in the Cage study as researchers found evidence for "dehumanisation, with a particular denial of 'human uniqueness' traits." Ergo, autism awareness is again pretty good, but more needs to be done in this area.

Minus any sweeping generalisations and judgements from little ole' me, I think it's important to frame some of this work in the context of other work from some of the authors on the topic of autism. I speak particularly of the Cage results, and how elements of this authorship group have previously expressed an 'inclination' to the whole social model of disability (see here) as being relevant to autism based on their other work [3]. The social model of disability by the way, opines that "people are disabled by barriers in society, not by their impairment or difference." Of course there is some truth in this idea as there are in many theories/hypotheses. The problem is however, when one assumes that society is the only barrier, and then potentially becomes blinded to the very real disability that a label is described and defined by. The fact also that the social model of disability is put forward as a counter to the medical model of disability is also a little unhelpful, and perhaps encourages some 'either or' thinking rather than looking at a potential mixture of influences and effects.

The comment about a 'denial of 'human uniqueness' traits' mentioned in the Cage study is also pertinent to other discussions/arguments in the context of autism. I speak about the term 'neurodiversity' which is often used to denote "a notion of neurological difference across humanity akin to the variation we see in plants and animals in biodiversity" and how such a term has grown in popularity over the years. One might see the Cage results as perhaps providing evidence that the notion of neurological diversity still has some way to go when it comes to the inclusion of autism under the heading, and indeed, making more progress towards illustrating just how heterogeneous the autism spectrum really is.

And finally, without trying to get too immersed in the implications of the Cage results in particular, that mention of 'human uniqueness' could also be viewed as another nail in the coffin for a problematic term used in some autism circles: neurotypical. And how, with all the complexity of the human brain and/or central nervous system, the term neurotypical is a still, very much, a scientific nonsense (see here)...

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[1] Stronach S. et al. Brief Report: Autism Knowledge and Stigma in University and Community Samples. J Autism Dev Disord. 2018 Nov 21.

[2] Cage E. et al. Understanding, attitudes and dehumanisation towards autistic people. Autism. 2018 Nov 21:1362361318811290.

[3] Cage E. et al. Experiences of Autism Acceptance and Mental Health in Autistic Adults. J Autism Dev Disord. 2018 Feb;48(2):473-484.

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"the friendships and social experiences of autistic girls are similar to those of neurotypical girls"

The quote heading this post - "the friendships and social experiences of autistic girls are similar to those of neurotypical girls" - comes from the findings reported by Felicity Sedgewick and colleagues [1] (open-access available here) continuing a growing research theme looking at the presentation of autism across the sexes/genders. The results however perhaps challenge the idea that "being autistic ‘overrides’ being female in some way."

OK, first things first, by mentioning the word 'neurotypical' the authors refer to a not-autistic control group. As I've said on many, many occasions, the word 'neurotypical' from a research/clinical point of view is however meaningless (see here): there is no way for a living brain, with all its complex structures, connections and functions, some of which are changing second to second, to ever be described as 'typical'. And autism research in particular really shouldn't be using such a misnomer, no matter how [social media] fashionable it might seem.

Rant over. Despite using the term, the Sedgewick paper covers an important real-world part of the whole 'gender differences in autism' area looking at "gender differences in the friendships and conflict experiences of autistic girls and boys relative to their neurotypical [non-autistic] peers." Over 100 adolescents (aged 11-18 years) were included for study; about half diagnosed with autism with an "independent clinical diagnosis of an autism spectrum condition." Said autism diagnoses were also complemented by assessment via the gold-standard ADOS which actually revealed that: "Two boys and four girls failed to meet the ADOS-2 threshold (score = 7) for autism." Data from these children were still included in the study given the "pre-existing clinical diagnosis" and other supporting information. I'm wondering however if perhaps some of these children were examples that an autism diagnosis (or reaching the cut-off points on one of the gold standard autism assessment instruments) is not necessarily for life (see here)? Further, all participants "completed the Friendship Qualities Scale, the Revised Peer Experiences Questionnaire and were interviewed about their friendships" and results were analysed...

Results: "Autistic and non-autistic girls’ conflict and friendships were more like each other than autistic and non-autistic boys, and vice versa." The authors frame this in the context that their findings "provide compelling support for the possibility that gender may be more important than diagnosis in determining young autistic people’s social experiences." That's not to say that there weren't some important group differences in relation to social challenges, conflict and conflict resolution - "autistic girls described an ‘all-or-nothing’ approach, either taking sole responsibility for what had happened... or ending the friendship entirely, seeing the other person as the wrong-doer..., or feeling it could not be resolved" - just that there was more to align girls than to divide them when it came to comparisons with non-autistic peers.

Authors also report results from their interviews with adolescents which again revealed that gender over a diagnosis of autism seemed to a key aspect. So: "Having a few good friends was key, with all girls talking about having a small number of close friends that they considered to be ‘best’ friends. These close friends were those who they spent the most time with and talked to most." Also: "Both autistic and neurotypical girls emphasised that friends supported them." And finally: "Both autistic and neurotypical girls alluded to wanting to fit in, but in different ways." It should also be noted that Sedgewick et al mention how 'camouflaging' (a term being increasingly used in autism circles) is not a specific strategy reserved for autism: "Few girls reporting having boyfriends, but most said people dated to fit in with the popular crowd. These behaviours could be seen as a form of ‘camouflaging’, as teenagers described seeking peer acceptance, even if they were not personally motivated to date."

As to the boys of this particular cohort, well again, there didn't appear to be any really prominent stand-out separation points between autism and not-autism. As the authors report: "autistic and non-autistic adolescent boys reported their friendship and conflict experiences as highly similar – activity-focused, practically supportive friendships combined with a laissez-faire attitude to conflict. The exception to this pattern was that neurotypical boys described more intimate friendship experiences than their autistic male counterparts."

Cumulatively the Sedgewick findings reinforce the idea that there may be some subtle but important differences between boys and girls, women and men diagnosed with autism (see here). In this light, the suggestion that "autistic girls (and possibly women) need different strategies and supports to understand and effectively navigate the social expectations placed upon them" is correct when compared to males diagnosed with autism. The results suggesting however, little significant differences in friendships and social experiences between autistic girls and non-autistic girls (and autistic boys and non-autistic boys) kinda grates against some of the narratives that have emerged in recent years. It implies that rather than viewing someone as an 'autistic girl' one should perhaps first focus on that person as a girl when it comes to social experiences and friendships rather than subscribing to the idea that autism is wholly 'behind' any issues as some 'identity' discussions have intimated. The findings also imply that camouflaging and masking are not necessarily exclusive features of autism but, perhaps in some contexts, are rather more representative of a general effect specifically across gender.

I would like to see a lot more research done in this area. I'd like to see more longitudinal work done looking at friendships and social experiences into adulthood with autism in mind, where other environments replace the school playground (including the online and social media environments). I'd like to know about how friendships develop, persist or 'fall to one side' and whether other 'comorbidity' (see here), that more likely than not will 'follow' a diagnosis of autism (see here), play any role in such social experiences. I'd also like to see further work on societal inclusion (see here) in the context of the Sedgewick research too. There is a scheme of work to do.

And let us also not forget that learning the intricacies of things like friendships and social experiences or challenges such as conflict are also influenced by other important variables, such as a role for siblings [2] (for better or for worse)...

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[1] Sedgewick F. et al. 'It's different for girls': Gender differences in the friendships and conflict of autistic and neurotypical adolescents. Autism. 2018 Oct 3:1362361318794930.

[2] Ben-Itzchak E. et al. Having Siblings is Associated with Better Social Functioning in Autism Spectrum Disorder. J Abnorm Child Psychol. 2018 Oct 3.

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'Growing out of autism' was talked about way back in 1993

I appreciate that for some people mention of the words 'growing out of autism' in the title of this post will be met with a furrowed brow. I appreciate that the very sweeping generalisation that all autism that is, has been or ever will be, is lifelong and immutable is something that some people adhere to almost religiously, as words like 'oh, they weren't autistic in the first place' ring out in some quarters to counter such 'growing out of' sentiments. I'm certainly not going to be able to change anyone's mind, and neither do I seek to.

But the idea that autism, for some, is not lifelong is something that is very evident in the peer-reviewed science domain and beyond. I've talked about it on a few occasions on this blog (see here and see here) and how 'subsequently not fulfilling the diagnostic criteria for autism' having previously done so, may have some quite profound implications beyond just the core presentation of autism (see here).

Recently PubMed decided to list the paper by Anne-Liis von Knorring & Bruno Hägglöf [1] published way back in 1993 (the year we were all asked to 'Shake the Room'). Theirs is an interesting paper insofar as providing a window on autism research decades back; even referring to a time when the term 'childhood psychosis' was still being used.

They report 'follow-up' results of a group of children and young adults residing in Northern Sweden. Previously diagnosed with childhood psychosis, all cases were re-evaluated and: "According to DSM-III-R, 38 children met the criteria of "autistic disorder"." Authors reported on various aspects of behaviour some 8-9 years later for 34 of the original 38 participants, and what happened to signs and symptoms in terms of things like stability.

For most participants, there was little change in their diagnostic status. Autism for the majority, was lifelong and indeed for some, showed "a mildly deteriorating course" but typically with some improvements in language and communication. The authors also mention how: "In one case symptoms of schizophrenia developed" which kinda taps into another area of increasing interest these days concerning the over-representation of psychiatric comorbidity in the context of autism (see here).

But then, something interesting: "Only one boy had "grown out of" autism without showing any autistic-like symptoms at all." Yes, it's only 1 out of 34 (two others from the original cohort who did not take part in the follow-up study were reported to be "well-functioning employed adult young men living by themselves") but nonetheless...

I've often pondered why 'growing out of autism' has not been received with open arms by some. I've come to the conclusion that there are likely a few reasons why.

So first, the idea of 'autistic identity' - where autism is seen as so much more than a diagnosis - might have something to do with it. Although identities change, modify and adapt throughout the lifespan, there is perhaps something 'safe' about the idea that being defined as 'autistic' is a constant, and the sense of belonging that perhaps follows, alongside terms like 'neurodiversity' gaining popularity. The evidence suggesting that such a constant might not be a universal constant for everyone is perhaps jarring for some. Indeed, from a neurodiversity point of view, those who are no longer autistic should perhaps then be viewed as transitioning to neurotypical perhaps...?

Allied to this sense of 'identity' I do wonder if some of the terminology associated with 'growing out of autism' might also play a role in how the concept has been viewed down the years. Take for example the term 'optimal outcome' made in reference to those who were were once autistic but at a later point don't hit clinical cutoff points. The insinuation is that where a diagnosis of autism or the presentation of significant autistic traits persists, there is an opposite: 'not optimal'. You can perhaps see how this paints autism, particularly in the context of that autistic identity. And it is indeed timely that there is research chatter about 'reframing optimal outcome' [2] recently...

Similarly, the idea of 'growing out of autism' also taps into the 'medicalisation' of the label. So, minus making too many direct comparisons, when individuals don't meet the clinical thresholds for the label (having previously done so), one could argue that this is evidence that some autism is akin to other medical diagnostic labels that wax and wane, whether naturally or following intervention. I daresay also that autism as seemingly being transient for some, also sits in the same domain of autism being 'acquired' for some. Y'know, those various examples in the peer-reviewed literature that suggest that infection (viral, bacterial, etc) can lead to autism (see here) or that autism appearing alongside various inborn errors of metabolism (see here) is a reality too.

I'm just opining as an outsider looking in, but these are some of the reasons that spring to mind for the seeming lack of interest (even disdain in some quarters) for such a group. Minus any sweeping generalisations from me, all of those previous points have collectively been noted in another context: sexuality...

Personally, I don't see such 'growing out of autism' cases as a threat to either identity or any other aspect of autism. You've probably heard of the term 'if you've met one autistic person, you've met one person with autism' and well, that goes as much for those who 'lose' their diagnosis as it does for anyone else. Anyone with some scientific curiosity should really be asking the question 'why?' Why do some people manifest autism (and reach all the diagnostic cutoff points for autism) at one part in their life but not another? Is it about masking or are there more complicated processes - psychological, biological, genetics - at work?  What role does intervention play (if any)? And what lessons can we learn from such a group outside of the idea that autism is a truly heterogeneous label?

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[1] von Knorring AL. & Hägglöf B. Autism in northern Sweden. A population based follow-up study: Psychopathology. Eur Child Adolesc Psychiatry. 1993 Apr;2(2):91-97.

[2] Georgiades S. & Kasari C. Reframing Optimal Outcomes in Autism. JAMA Pediatrics. 2018. June 25.

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"Social cognitive deficits are present in a wide range of clinical conditions"

Happy New Year!

Welcome to Questioning Answers 2018-style. Let's continue...

Today I'm bringing to your attention the findings reported by Jack Cotter and colleagues [1] who concluded that: "social cognitive deficits appear to be a core cognitive phenotype of many clinical conditions."

Social cognitive issues defined as "mental operations that underlie social interactions" and "includes a range of cognitive processes that help individuals to understand how others think and feel" are something not unknown to the core subject of this blog: autism. Indeed, Cotter et al mention how the "most heavily researched aspects of social cognition are emotion recognition and theory of mind (ToM)." Right or wrong, ToM in particular, has had quite a significant influence on autism research and thought down the years (see here).

Cotter and colleagues "sought to collate existing meta-analytic data on social cognitive performance among individuals with a range of clinical conditions" on the basis that whilst the label of autism has received the lion's share of research interest, social cognitive issues perhaps span a far wider range of labels/conditions. They scoured the peer-reviewed literature and identified some 31 meta-analyses published that "examined performance on facial emotion recognition (24 papers) and/or ToM tasks (24 papers) among 30 different clinical populations relative to controls." The sorts of clinical populations identified ranged from psychiatric disorders such as psychosis and schizophrenia, to neurological disorders such as epilepsy and traumatic brain injury to developmental disorders such as attention-deficit hyperactivity disorder (ADHD) and intellectual (learning) disability.

Their conclusions: "Though these results do not provide directly comparable estimates between clinical conditions, they provide a robust indication that social cognitive deficits appear to be a core cognitive phenotype of many developmental, neurological and psychiatric disorders." The authors go on to discuss how, on the basis of their findings, social cognitive issues (impairment) might be "a general biomarker indicative of neurological abnormality" more generally; also, in some contexts, providing information on the 'progression' of a particular condition.

In these days of ever-blurring labels and conditions, where comorbidity is proving to be the rule rather than the exception [2] (see here also), there is common sense in the Cotter findings. Sense, insofar as the idea that no one diagnostic label has generally got a monopoly on a particular behaviour and/or symptom and that social cognitive issues might be 'core' to quite a few conditions. A greater appreciation of such an idea could potentially impact, in many different ways, on what we think about many seemingly different psychiatric, developmental and neurological labels. A few stand-out points include: (a) a reiteration of how nonsensical the term 'neurotypical' is from a social cognitive perspective when describing 'not-autism' (see here); (b) a further illustration of the value of a professional assessment as and when something like autism is suspected, rather than just a reliance on brief 'are you autistic?' questionnaires that tend to rely heavily on social cognition as a 'symptom' (see here); and (c) investigation into whether or not important biological 'issues' thought to accompany social cognitive 'issues' could also be quite wide-ranging among many conditions/labels (see here for some discussion on the concept of inflammation for example).

And since we're on the topic of grand, sweeping psychological concepts spanning different conditions, how about the idea that executive function issues might also cross labels [3] too...

Stay tuned for more in 2018.

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[1] Cotter J. et al. Social cognitive dysfunction as a clinical marker: A systematic review of meta-analyses across 30 clinical conditions. Neuroscience & Biobehavioral Reviews. 2018; 84: 92-99.

[2] Posserud M. et al. Autism traits: The importance of “co-morbid” problems for impairment and contact with services. Data from the Bergen Child Study. Research in Developmental Disabilities. 2018; 72: 275-283.

[3] Carter Leno V. et al. Testing the specificity of executive functioning impairments in adolescents with ADHD, ODD/CD and ASD. Eur Child Adolesc Psychiatry. 2017 Dec 9.

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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

Autistic adults as critical autism experts (with research caveats)

"Findings suggest that autistic adults should be considered autism experts and involved as partners in autism research."

That was the conclusion reached in the paper by Kristen Gillespie-Lynch and colleagues [1] (open-access) reporting on the results of an online survey assessing "autism knowledge and stigma among 636 adults with varied relationships to autism, including autistic people and nuclear family members." Among the various groups of people who contributed to the survey, several viewpoints emerged. The message primarily however was that: "autistic people are autism experts through their lived experiences." I don't think many people would quibble with such findings.

A few other details emerged from the Gillespie-Lynch study that merit discussion. Many participants showed a "reduced tendency to view autism through a deficit-defined medical model compared with non-autistic people." This is perhaps not an unexpected finding given the history of applying the medical model to autism and the rise and rise of the neurodiversity movement that "challenges the medical model" in particular respect over the question of deficit vs. difference and implications thereof. Although the medical model provides the means to identify and diagnose autism or autism spectrum disorder (ASD) (on the basis of deficits), it's not unexpected that for some, once those tasks have been completed, the 'treatment' side of the model is not necessarily a top priority; or at least not as important as addressing the various inequalities that seem to stem from a diagnosis. That being said, I do agree with the authors sentiments that: "the neurodiversity movement and the medical model overlap in recognizing that supports are needed to ameliorate challenges associated with autism." Those challenges are variable and person-dependent but include the effects of both core and peripheral signs and symptoms and the various over-represented comorbidities that seem to follow a diagnosis of autism (see here). I would, at this point, also caution on using the words 'biopsychosocial model' in the context of autism as the authors have included in their discussions, given what it has meant for other labels (see here) and the potential 'psychologising' of some important medical symptoms.

I added the words 'with research caveats' to the title of this post to ensure that such a positive message about autism and the autism spectrum is not just given a 'free pass' when it comes to scrutiny of the scientific method, the way the study was carried out and the applicability of the results to the entire autism spectrum. This was an online survey not a face-to-face piece of research (other related research has similarly used such a method and on more than one occasion) and the authors acknowledge that they: "did not verify diagnosis of participants who self-identified as autistic" for example. Given what we are beginning to see when it comes to some of the 'self-screening' instruments out there regarding possible autism or not (see here), I'm always a little cautious that self-diagnosis / self-identification does not necessarily mean [eventual] clinician-diagnosed autism and how important this is when it comes to correctly ascertaining the wants and wishes of those diagnosed as being on the spectrum.

On the point about the representativeness of this research, the authors also note: "Findings may not generalize to autistic participants who lack the verbal and computer skills needed to complete the survey." Yet another example it seems of this important issue.

I have to say that I'm also a little disheartened that yet again an important group that was once very firmly on the autism spectrum aren't really given the credit they deserve according to the Gillespie-Lynch findings: "Autistic participants were more likely to recognize that most children cannot outgrow autism." The 'optimal outcome' children and adults it seems, still represent one of the most maligned groups associated with the autism spectrum (assuming that optimal outcome occurring in up to 9% of the autism population is not an insignificant figure). This despite the fact that even the diagnostic stability of the most 'high-functioning' cases of autism can wobble it seems (see here) even into adulthood. One of the premier experts on autism also seems to agree according to some recent media (see here). I often wonder if the seeming lack of acceptance of this group/feature might have something to do with the 'identity' side of autism and the idea that within the vast heterogeneity of autism (or the plural autisms if you prefer) the use of 'them and us descriptions' like 'neurotypical' are perhaps not as binary or long-lasting as many would believe or want to believe?

Within the context of [approximate] phrases such as 'if you've met one person with autism, you've met one autistic person' there is caution in over-generalising these latest results but they are nonetheless important. I think it would be rather fitting to end with a few choice phrases from the Gillespe-Lynch paper: "As many of our survey respondents indicated, each person, regardless of whether or not they are autistic, is unique" and: "Some autistic people seek out factual knowledge about autism while others believe that they can only be experts in their own particular form of autism." Either way, the insights provided by people on the autism spectrum (all parts of the autism spectrum and indeed, across the age ranges) should be valued, and where possible, incorporated into research and practice.

And one voice from the autism spectrum carries some rather sensible messages...

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[1] Gillespie-Lynch K. et al. Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts. Front. Psychol. 2017. March 28.

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Gillespie-Lynch, K., Kapp, S., Brooks, P., Pickens, J., & Schwartzman, B. (2017). Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts Frontiers in Psychology, 8 DOI: 10.3389/fpsyg.2017.00438

Autism, the autisms or "developmental brain dysfunction"?

"If you've met one person with autism, you've met one person with autism" so the oft-cited phrase goes.

The implication is that whilst unified under the label of presenting with the triad/dyad characteristics of an autism spectrum condition, the heterogeneity present across the spectrum coupled with other comorbidity, allied to factors such as genes, personality, temperament, maturation, environment et al, mean that everyone is different and importantly everyone is dynamic.

Umbrella under an umbrella? @ Wikipedia  

Another term used by some people (including researchers) is that of 'neurotypical'  to somehow denote not-autism. For me however, that's always been a little too simplistic. It implied (a) that there is a definite line between autism and not-autism which kinda over-simplifies things including the broader autism phenotype (BAP), and (b) that there is such as thing as 'neurotypical' and indeed is counter to the phrase: 'if you've met one person, you've met one person' which should surely be as pertinent to not-autism as it is to autism; if you get me?

These concepts are relevant as today I'm talking about two papers: a paper by Whitehouse & Stanley* (open-access) questioning whether autism is one condition or multiple conditions, and a paper by Moreno-De-Luca and colleagues** which implies that we should even be doing away with behaviourally-defined labels such as autism and schizophrenia in favour of an altogether broader definition of 'developmental brain dysfunction' or DBD.

Regular readers might recognise the name Andrew Whitehouse as being one and the same researcher who has talked about various autism-related results from the Raine study (see here and here and here). His latest opinion piece builds on the fact that despite the 70 year anniversary since the first description of autism was published by Kanner (with appropriate consideration for Hans Asperger too), alongside huge amounts of time, money and research efforts, we are really still only scratching the research surface of the condition(s) known as autism. Certainly science hasn't yet come up with many defining 'universal' reasons to account for the appearance of the the clustering of symptoms and as for intervention options, well take a look at the recent draft guidance from NICE to see what I mean. One of the main stumbling blocks he and his colleague opine on is the "phenotypic variability" and how moves should be made towards defining smaller subgroups on the autism spectrum. In effect talking about the autisms over autism as per another very interesting paper by Poot*** (open-access).

To many people this is not new news. That the search for an 'autism gene' or 'autism genetic mutation' (sorry about the cold science term) or indeed 'autism environmental variable' has so far been underwhelming in terms of results coupled to the cost/benefit ratio of such research for example, is testament to the variability present in both autism and not-autism. This demonstrates also how complex a continuum the autism spectrum is. Indeed how complex a thing the human spectrum is****.

Likewise when it comes to intervention, I've talked before on this blog about how we should perhaps be re-assessing the way we look at proposed interventions and in particular focusing on subgroup responses rather than some almighty universal spectrum response to denote intervention success of not. Without equating autism with cancer or vice-versa, the recent opinion paper by Stewart & Kurzrock***** (open-access) might inform this methodological discussion somewhat further.

Whitehouse and Stanley also talk about the lessons learned from cerebral palsy (CP) and how where once CP was thought of as "a unitary disorder", the more contemporary view is somewhat more "umbrella" like. I've covered CP on this blog before so won't say much more about that; I think many people might agree that autism is similarly an umbrella term; even more so when the DSM-V comes into force in literally weeks time (Monday 20th May 2013 apparently).

The Moreno-De-Luca paper goes one stage further. As per the paper and some associated media attention (see here) the suggestion is that not only is there the autisms, but that because of the various overlapping genetic features between the autisms and conditions such as schizophrenia (the schizophrenias), we should be looking at using an even more over-arching concept to group these collected diagnoses together: developmental brain dysfunction (DBD). A sort of umbrella for the umbrella if you like. It's not a new suggestion by the way****** (open-access).

I can imagine that your view of autism - be that a personal perspective of autism, a parental perspective or just an observer looking in - is probably going to influence how you receive this suggestion to some degree. For a researcher looking at the possibility of shared genetics or even epigenetics between conditions which might overlap, there is some sense in looking at the bigger picture. My recent post on common ground (see here) based on the 'five psychiatric disorders linked' paper******* kinda reiterates this position alongside other papers including this one from Caamaño and colleagues******** on subclinical comorbid psychopathology. That and the fact that there might be some convergence when it comes to the autism and schizophrenia spectrums for example (see here) also makes a case. The authors sum it up well: "genes don't respect our diagnostic classification boundaries, but that really isn't surprising given the overlapping symptoms and frequent co-existence of neurodevelopmental disorders".

Other perspectives - and I am only speculating on such viewpoints - might not necessarily share the same sentiments. Aside from leaving out any important relationship that genes might have with little things like the environment, as in maternal immune activation during pregnancy, or all those correlations with other facets of modern living (see here and here), the implication of 'brain dysfunction' takes us back to the whole neurotypical 'us and them' scenario and the questions: what exactly is 'normal' brain function? and what factors can and do affect it? I might add that I can also see how some people might not necessarily be taken with the concept of autism being akin to 'brain dysfunction' in the same way that lumping autism and schizophrenia together might have other, more societal connotations.

I'm going to stop there with this post, save any charges of over-analysing the papers and potential implications. Accepting that a diagnosis is currently the best way for people to [theoretically] receive the help and support they may need, I'm not sure we are in a position to re-write the diagnostic manuals just yet with autism and schizophrenia in mind. That umbrella-ing (is that a word?) autism with other conditions might also impact on the autism awareness message that we've all just had with World Autism Awareness Day is another consideration to bear in mind.

That being said, I do think we have already started to see hints of this brave new world of links and threads coming together. The DSM-V diagnosis of autism seems to be quite explicitly spectral and whilst not yet knowing the consequences of removing diagnoses such as Asperger syndrome and how that Social Communication Disorder category will work, the idea behind the change is sub-type removal similar to that envisaged for schizophrenia (see here and here). I'm not altogether sure but I am also wondering how and whether there will be any exclusion criteria on for example a dual diagnosis of autism and schizophrenia in the new guidance and what effect this might have? We wait and see.

"OK stop already". And I will.

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* Whitehouse AJO. & Stanley FJ. Is autism one or multiple disorders? Med J Aust 2013; 198: 302-303.

** Moreno-De-Luca A. et al. Developmental brain dysfunction: revival and expansion of old concepts based on new genetic evidence. The Lancet Neurology. 2013; 12: 406-414.

*** Poot M. Towards identification of individual etiologies by resolving genomic and biological conundrums in patients with autism spectrum disorders. Molecular Syndromology. February 2013.

**** Mitchell KJ. What is complex about complex disorders? Genome Biology. 2012; 13: 237.

***** Stewart DJ. & Kurzrock R. Fool's gold, lost treasures, and the randomized clinical trial. BMC Cancer 2013; 13: 193.

****** Hrdlicka M. & Dudova I. Controversies in autism: is a broader model of social disorders needed? Child & Adolescent Psychiatry and Mental Health 2013; 7: 9.

******* Cross-Disorder Group of the Psychiatric Genomics Consortium. Identification of risk loci with shared effects on five major psychiatric disorders: a genome-wide analysis The Lancet. February 2013.

******** Caamaño M. et al. Psychopathology in children and adolescents with ASD without mental retardation. JADD March 2013.

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Whitehouse AJ, & Stanley FJ (2013). Is autism one or multiple disorders? The Medical journal of Australia, 198 (6), 302-3 PMID: 23545020

Moreno-De-Luca A, Myers SM, Challman TD, Moreno-De-Luca D, Evans DW, & Ledbetter DH (2013). Developmental brain dysfunction: revival and expansion of old concepts based on new genetic evidence. Lancet neurology, 12 (4), 406-14 PMID: 23518333