"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.

----------

[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.

----------

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)...

----------

[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.

----------

"the importance of considering how autism acceptance could contribute to mental health in autism"

The quote heading this post comes from the findings reported by Eilidh Cage and colleagues [1] (open-access) who sought to examine how "experiences and perceptions of autism acceptance could impact on the mental health of autistic adults."

Using an on-line survey "to test the relationship between perceived autism acceptance and mental health (specifically, depression, anxiety and stress)" findings are reported based on responses from over 110 people diagnosed as on the autism spectrum. I say 'diagnosed as on the autism spectrum' but as with any internet survey, there is always a degree of 'trust' that autism diagnoses are being reported faithfully just as it is with other labels that were under study: "a high proportion of participants reported additional diagnoses." Indeed, I also note that "11 participants reported that they did not currently have a formal diagnosis of autism" and were still included in some of the analyses...

No mind, the authors sought to 'quantify' autism acceptance given no measure currently exists by asking various questions including "whether they felt that society (specified as the general public, made up of people who did not personally know them) generally accepted them, with “yes”, “no”, “sometimes” and “prefer not to say” as response options." Responses were also sought to statements such as "over the past week, I have felt accepted by society as an autistic person/person with autism" and onward "perceptions of autism acceptance from different sources." This was complemented by responses to the Depression, Anxiety and Stress Scale (DASS-21).

Results: "depression was predicted by autism acceptance from external sources (society, family and friends) and personal acceptance" but anxiety was not seemingly *linked* to autism acceptance. Drilling down further into their results, researchers observed that "greater personal autism acceptance predicted lower depressive symptoms" indicating that variables such as self-esteem might mediate any risk of presenting with depressive signs and symptoms [2] (see here for my take). This is something that perhaps tallies with other research talking about autistic traits and wellbeing [3].

The author has also written a piece for The Conversation on her research study (see here).

I'm not quite sure why the ever-fluffy psychological concept of 'Theory of Mind' (ToM) needed to be introduced into the Cage paper given that no measure of ToM was actually included in the study. A quick search of other published research from these authors reveals that ToM is a feature there too [4]. The authors talk about how "Theory of Mind ability may impact on perceptions of autism acceptance" but I'm not so sure that this is particularly important. It's kinda like suggesting that society is completely autism aware and accepting/accommodating but those on the spectrum 'don't seem to understand it' as a result of any ToM issues, which is of course, a nonsense. ToM also still requires a bit more investigation into what it actually means and covers (see here) including the idea that issues with ToM might themselves be 'impaired' as a result of something like depression (see here). I'd also point out that quite a few other over-represented diagnoses potentially appearing alongside autism also seem to present with ToM issues [5] too...

"There is still a long way to go in understanding and tackling the high prevalence of mental health difficulties in autism, but we believe that the social model approach is a useful and positive lens through which mental health outcomes could be improved." That was the conclusion reached by authors on the basis of their findings. I would agree that there is still a long way to go on the topic of mental health and autism and the social model approach - "disability is caused by the way society is organised, rather than by a person’s impairment or difference" - is an option for further research of this kind. But I would also caution that one needs to balance such a perspective with others too (see here), and accept that the organisation of society is not always the most disabling aspect of a person's disability, particularly when it comes to something like depressive symptoms. Indeed, to say that depressive symptoms accompanying autism might merely be a facet of a 'lack of acceptance' or a lack of understanding from society or the individual themselves, risks plunging autism back into some pretty dark times (see here) and is likely to conflict with various other views. From a clinical point of view, it ignores some very serious research on the wide spectrum that is depression potentially present for all-manner of different reasons, being relevant to the equally wide spectrum that is autism (see here for a discussion on how depression might actually be something rather more fundamental to some autism over just being 'comorbidity'). At worst, it may even delay or put people off from seeking timely recognised treatments when depression becomes 'clinical', which could be a rather dangerous path to start down (see here).

Having said all that, I don't however think too many people would argue with the idea that personal perception(s) whether positive or negative are likely to impact on a person's mental (and physical?) health and wellbeing. If one is constantly feeling like an 'outsider' or excluded or feels that ones needs are not being met, added to a possible history of being bullied or loneliness or indeed, with other clinical labels also potentially being present for example, one is likely to build up a mindset appropriate to such a situation which probably includes some advanced risk for depressive signs and symptoms. From that point of view, much more needs to be done to look at the ways and means of impacting those personal perceptions; possibly taking into account other relevant research which has some [evidence-based] suggestions on things like societal inclusion and increasing access to it (see here) for those who want this option, alongside other complementary strategies where some [peer-reviewed] evidence is present (see here) and continues to be produced (Google the 'HUNT Cohort Study' to see what I mean). I say all this reiterating that something like chronic loneliness can very much be a major contributor to issues like depression.

I also understand the calls to make society more autism-accepting which I think most people would support as being pertinent across the ENTIRE autism spectrum (see here). I'm however, a little unsure of the real-life plan and details of the plan attempting to achieve this goal; particularly in the current climate when even getting a timely diagnosis seems to be an uphill struggle and when also many on the autism spectrum are seemingly left to fend for themselves post-diagnosis. Society it seems, is getting much more autism aware (for good or bad based on current media portrayals for example) but not necessarily getting more autism accommodating nor necessarily putting important words into actions. Indeed, one could argue that other societal factors like unemployment and financial hardship readily experience by those with autism are probably as, if not more, important to their experiences of something like depression yet little appears to be done to improve such issues for the vast majority...

As for the "experiences of “camouflaging” [that] could relate to higher rates of depression" also mentioned in the Cage article, I have quite a lot of time for this area of autism research (see here). Particularly the idea that camouflaging is not necessarily an all-female pursuit in the context of autism (see here) and how truly energy-sapping it can be for many, many people on the spectrum...

----------

[1] Cage E. et al. Experiences of Autism Acceptance and Mental Health in Autistic Adults. J Autism Dev Disord. 2017. Oct 25.

[2] McCauley JB. et al. Self-Esteem, Internalizing Symptoms, and Theory of Mind in Youth With Autism Spectrum Disorder. J Clin Child Adolesc Psychol. 2017 Oct 19:1-12.

[3] Rodgers JD. et al. Brief Report: Personality Mediates the Relationship between Autism Quotient and Well-Being: A Conceptual Replication using Self-Report. J Autism Dev Disord. 2017 Sep 16.

[4] Cage E. et al. Reputation management: evidence for ability but reduced propensity in autism. Autism Res. 2013 Oct;6(5):433-42.

[5] Wang Y-Y. et al. Theory of mind impairment and its clinical correlates in patients with schizophrenia, major depressive disorder and bipolar disorder. Schizophrenia Res. 2017. Nov 7.

----------