Mad Autistics

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FotoEmotions/Pixabay

I regularly come across individuals with intersecting neurodivergent disabilities. For instance, its very common to find autistics who are learning disabled, dyslexics with ADHD, and so forth. But one intersection I very rarely see are mad autistics, but which I mean individuals who identify as both autistic and mad.

This seemingly elusive intersection is particularly important to consider given the common goals of the neurodivesity movement (which has mainly focused on autism and other developmental disabilities), and the mad pride movement (which often focuses around classifications such as schizophrenia and bi-polar). Notably, the neurodiversity movement and mad pride movement are very similar in their fundamental aims, philosophies, and arguments. Yet, in practice, there has been less dialogue than we might expect given how closely aligned the movements are in theory (although see, e.g. here).

Some hypothesise that madness and autism as at opposite ends of a cognitive spectrum (see e.g. here) making the division natural. But I suspect the real reason we don’t often see them both in one person is to do with stereotypes. Autism is often framed as being a kind of robotic hyper rationality and absence of emotion, while madness is often stereotyped as being overly emotional and irrational. 

Regardless of how misleading these stereotypes may be, it is vital to recognise that such biases will delineate how all of us think about both others and ourselves.  My own suspicion is that these stereotype framings stop people from simultaneously embracing both identities to some extent, forcing a kind of epistemological stifling on us that hinders our recognition of the prevalence of this intersection even as we live it.

This is a form of what feminist philosopher Miranda Fricker calls “hermeneutical injustice“. That is, instances where our shared vocabularies (and the stereotypes that comes with them) are structured a way that distorts the self understanding of minorities in a manner that is harmful or limiting. Consider, for instance, when being gay was wrongly construed as a mental illness rather than a sexual orientation. This would have been a form of hermeneutical injustice in so far as it negatively distorted the self understanding of gay people, often stifling the very existential possibility of embracing being gay as a legitimate way of being. 

By the same token, though, I also wonder if each of the two identities could help break down harmful stereotypes of the other. That is, if autistics begin to explore their disposition to aspects of madness, this could help challenge the robot stereotype, while mad folk embracing their autistic traits might be similarly helpful for challenging narratives about madness that undermine the legitimacy of mad rationalities.

Doing this may not only be individually liberating, but could also help foster solidarity across two political movements that should sit naturally side by side.

Pride, Pathology, and Prejudice: the bio-politics of PDA

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Photo credit: gagnonma1993/pixabay

 

The Emergence of PDA

The term Pathological Demand Avoidance (PDA) was coined by child psychologist Elizabeth Newson in the 1980s to indicate a previously-unnoticed developmental disability. On the one hand, she had increasingly found that the then popular term “atypical autism” was unhelpfully vague for clinical practice.  What’s more, she kept noticing an as yet undocumented profile that was similar to autism, but which was specifically associated with anxiety regarding the “ordinary demands” of everyday life. Based on her identification of this new human kind, today PDA is increasingly taken to be a close cousin or sub-type of autism, albeit associated associated with various other traits than the typical presentation. While it took some time to catch on, by 2014 Newson reported that PDA had “wide recognition as a clinically useful concept”.

For those who had spent decades campaigning to have the classification accepted and recognised, this was good news. Yet the validity of the classification term remains controversial, and while it is increasingly recognised and diagnosed, it is not listed in the key diagnostic manuals used worldwide. Moreover, in 2013 Dr Damian Milton – autistic self-advocate and sociologist – questioned the PDA construct, asking “exactly who has a ‘pathological’ needs to control whom?” By providing a critical social analysis of PDA he was able to argue that the construct was an “emblem of contemporary biopower in action”, whereby autistics who had merely asserted their agency were being labelled as pathological for not sharing the same preferences as the society that thereby felt the need to control them.

While Milton’s analysis framed PDA as an expression of autistic agency, in 2017 critical autism scholar Richard Woods then took the opposite view: he depicted PDAers not as expressing agency, but rather as passive victims of the “autism industry” who will be altered in light of the “looping effects” of the PDA label. In particular, he predicted that: “These individuals’ memories will change to align with the descriptions of PDA. They will now adapt their behaviours, acts and temperament to reflect those expected of PDA.” In turn, Woods has also been adamant that PDA is not part of autism. So in Stark opposition to Milton, who depicted PDA as a form of autistic agency, Woods depicted it as not-autism, and as a lack of agency.

Unsurprisingly, an article that depicted PDAers as mere passive recipients of a pathologising label which controlled everything from their memories to their future identities, was deeply offensive to those who identify as PDAers. Some PDAers responded that Woods’ take was condescending, even a form of gas-lighting. From their perspective, Woods is assuming the role of an expert in order to invalidate their variant of autistic agency and indeed act as a self-appointed gate-keeper when it comes to who counts as really autistic.

While worries regarding the the functions of bio-power in the case of PDA are legitimate, the response from PDAers does expose genuine issues in Woods’ analysis. On the one hand, one the core mantras of disability studies is “nothing about us without us”, yet Woods’ analysis wholly failed to engage with the voices of those who identify as a PDAers (importantly, he has corrected this in subsequent engagements). But the main issue I’ll focus on here regards how he misunderstands the main theory he relies on to reach his conclusion, namely the concept of “looping effects”. Understanding this problem will help show a different way of understanding the construct that both acknowledges its validity as an identity yet which also acknowledges worries regarding undue pathologisation and medicalisation.

Looping-Effects and Moving Targets

The concept of “looping effects” was developed by the philosopher Ian Hacking in order to understand how human kinds (i.e. the various ways sciences classify humans) change over time. Because humans interact with the labels we define each other by, labelled-humans, those who label them, and in turn the labels themselves, continually “loop” so that the kinds themselves becomes what Hacking calls “moving targets”.

Yet, while Woods, uses this concept to depict PDAers as passive victims of the “autism industry”, this misses a core part of Hacking’s point, which is that humans are never merely passive recipients of labels. In fact, the very thing Hacking emphasises is that, by our very nature, we interact with (rather than merely accept) labels, affirming some parts while challenging others. And this can clearly be seen in the PDA, for in stance in the many blogs of PDAers where diagnosed individuals critically discuss the construct and the various stereotypes surrounding it.

Another thing to note is that on Hacking’s analysis, it is not primarily the psychiatric industry that pathologises, but rather society more broadly. Psychiatry mainly acts as the catalyst, by developing specified diagnoses for traits already pathologised by society more generally. For instance, when being gay was wrongly classified as a mental illness, it was psychiatrists who medicalised it, but they only did so (and only could have done so) because it had already been deemed pathlogical by a homophobic society as such. Similarly, when autism was first medicalised in Nazi-occupied Vienna, this was because Nazi normativity already excluded the traits that later became definitive of autism, rather than psychiatrists simply pathologising it out of the blue. In short, psyciatry does medicalise and classify human difference, but it doesn’t underlie its pathologisation – it only medicalises and classifies dispositions that have already been pathologised (and hence marginalised and disabled) by the broader culture.

One reason this is important regards how Hacking understands the process of pathologised groups (gays, autistics, the mad, etc.) coming to resist via relcaiming their identities. While it is easy in retrospect (and right) to condemn how harmful and misguided psychiatrists have been in their acts of over-medicalisation, part of the upshot of Hacking’s analysis is that such mediclisations have often been a vital first step in the process of emancipation. For the labelling of a human kind provides an initial grouping that is then studied and quantified, which then provides the space for those so-labelled to form a community and engage with the label, and in turn challenge the very pathologisation that led to their medicalsiation in the first place. So by creating classifications for already implicitly pathologised human dispositions, medicalisation often functions in the long run to help resist pathologisation by providing the conceptual basis for new identities, as Hacking documents in a number of historical and contemporary cases.

Bearing this in mind, one thing to note here is that, even if Woods or Milton is right in their analyses of how the PDA construct has functioned, this still wouldn’t mean it will always function like this. It may be a necessary first step for the coming together of a human kind not previously recognised. Yet, as the “nothing about us without us” mantra indicates, this emancipation must primarily come from those who self-identify rather than being forced on them from the outside.

From Prejudice to Pride

Based on this analysis, it is perfectly possible to recognise how PDA may currently be a legitimate and useful autistic identify for some, but also to simultaneously acknowledge how it may nonetheless be unduly pathologising in terms of its deficit framing and political functions. Crucially, though, the emphasis for those worried about the bio-politics of PDA should be on helping to cultivate a conceptual space from which reclaiming PDA becomes more widely viable for those who wish to do so. If successful, this should alleviate the political worries of Woods and Milton, while also avoiding things like dismissing identities or gate-keeping the concept of autism.

Interestingly, such a reclamation has already begun. See, for instance, PDAer Riko Ryuki’s  memes on the “positive attributes of PDAers“. Positive traits Ryuki associates with PDA include advocating for fairness, being good at solving problems, and imagination and creativity. Contrast this for a moment with this checklist for PDA in teenagers developed by medical professionals. Examples of traits considered pathological include “Invents fantasy worlds or games” and “Attempts to negotiate better terms with adults” (i.e., negotiate fairness).

An interesting question is why these traits were framed as pathological in the first place. One possible explanation is that these “ordinary demand” reflects the values of a neo-liberal society that precisely discourages individuals demanding better terms, and encourages focusing on production over solving social problems or the imagination of a better world. While such traits may therefore be deemed problematic in a neo-liberal society, those not wedded to this ideology may wonder whether such values themselves are pathological. (Indeed, we may also wonder whether it is coincidence that people began being pathologised, and then medicalised, in this specific way in the UK during the Thatcher years.)

In any case, bearing the clash between Ryuki’s positive reclamation of the resistance to these demands and the neo-liberal society that enforces them , there’s good reason to agree with Milton that PDA may represent not deficit, but rather autistic persons who have “gained a modicum of normative social skills and [are] simply asserting their agency“. But it is vital to recognise that this is wholly compatible with PDAers reclaiming PDA rather than seeing it as reason to reject the construct, or indeed reject PDAers from the autistic community.

Indeed, following this initial reclaiming of the specific dispositions associated with PDA, reclaiming the very classification of PDA itself as a badge of pride would be possible too. For while what the psychiatrists who diagnose PDA refer to when they say “pathological” is the avoidance, we can equally take the “pathological” to instead refer to the demands of a sick society. Whether PDAers decide to do this, however, will be up to them.

 

 

 

 

 

 

 

Did Tory Austerity Kill My Brother?

My brother Jonny died on Christmas morning a few years back. He was in his early thirties, and was on both the autism and schizophrenia spectrums. While kind, thoughtful, and clever, he was unable to work since he didn’t have the support he needed. He spent years being moved around various forms of chronically understaffed and underfunded sheltered accommodation; and it was in one such place that he died.

Tragically, among multiple other systemic failures, the sole person working there that night who was supposed to routinely check each room at 10pm, was new and hadn’t gone through mandatory training. Because of this, they simply didn’t check in during the time-frame within which he may have been saved.

This lack of support was in significant part due to Tory austerity, which ruthlessly undermined all the services that should have kept him safe. This was so to the extent that austerity was condemned in a 2018 UN report for breaching international agreements regarding the rights of disabled people. Since then I’ve spent a lot of time thinking about how he’s become part of that ‘austerity to blame for 120,000 deaths‘ statistic from the previous year.

But to me he was my brother, and my best friend back when we lived together as kids. Later, as an adult I always wished I could help look out for him. Unfortunately we lived far apart, and until fourteen months ago, I was barely able to afford to feed and house myself (let alone a train ticket to visit), despite working long hours. Such is the reality of Tory Britain.

Now, with another election looming, when I see people say things like “Jeremy Corbyn isn’t fit to be prime minister so I’m voting Tory”,  what I hear is “I prefer to vote for someone who will kill people like your brother”. That’s not what they intend of course. But it is a wholly predictable effect of their vote, which is by far the most important thing here.

I’ve stopped debating with even remotely dedicated Tories. I rather think theatrical displays of rationality and civility over this sort of thing are abhorrent as well as pointless. And I couldn’t care less that the Channel 4 FactCheck team felt the need to point out that there is an aspect of speculation in the 120,000 statistic. It could have been slightly less, sure. I suspect the number is much higher, not to mention  ever increasing.

But if there is anyone out there who is undecided, who has registered to vote but doesn’t closely follow politics, who has voted Tory previously for some passing reason and isn’t so sure this time, or who feels that all politicians are the same–If you care about vulnerable or marginalised people at all, if there is anyone like my brother in your life, please, this time, use your vote to help get the Tories out.

A better Britain is possible. My own preference is for Labour, who have been working closely with autistic and other disabled people to develop an alternative vision. Labour now state on their 2019 manifesto that they will “end this cruelty, restoring the protections that disabled people and their families – many of whom shoulder the cost of their care – should expect in one of the richest countries in the world.” I keep finding myself wondering if Jonny would still be alive had this manifesto had been implemented five years ago.

We’ve now had ten years of the Tories undermining our NHS, our education, our social care, our dignity. In Tory Britain, the preventable deaths of vulnerable people like my brother is increasingly becoming normalised. If we don’t stop them now, I dread to think of how many more thousands will meet the same end over the next five years.

The Eugenicist Origins of Autism Prior to Hans Asperger

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I’ve recently seen lots of autistic people rejecting the term “Asperger’s” because it is associated with Hans Asperger, who some researchers think was knowingly complicit in Nazi eugenics (although others have more recently contested this, based on newly translated evidence). The general move has been to use “autistic” instead of “Asperger’s”, to shift away from associations with Hans Asperger.

I am sympathetic to dropping “Asperger’s” in favour of “autism”. This is mainly because the separation is divisive for the autistic community, and since functioning labels are often unhelpful and dehumanising. Nonetheless, the argument that “Asperger’s syndrome” should be dropped in favour of “autistic” because Asperger was a Nazi strikes me as overly-simplistic, for at least two reasons.

First, Asperger himself didn’t use the term “Asperger’s syndrome”; in fact, he was the first to use “autistic” as a diagnostic label. Yes, the term “autism” had been in use since Eugene Bleuler coined it in 1908 (as I’ll come back to), and “autistic” had been passingly used as a descriptive term (e.g. by Sukharevra in 1925). But Asperger was the first to use it to refer to a specific kind of person (i.e. the autistic person) rather than as a general descriptive term attributable to anyone if they displayed autistic type traits. Moreover, he used it to refer to all autistics, not just those considered more able to function in line with social norms. In contrast to the very different classification “Asperger’s syndrome” (invented by Lorna Wing much later), Asperger was explicit in his 1944 paper that autism “occurs” at all levels of cognitive ability. In short, the use of the label “autistic” in the way it is increasingly being used, was the creation of Hans Asperger. So, using “autistic” is an endorsement of his framing, not a rejection of it.

The second thing to note is that, even non-withstanding the first point, the term “autism” itself was coined by a rabid eugenicist (who was also pretty racist and homophobic), Eugene Bleuler. For instance, here he is in 1924 promoting killing disabled people in order to stop his “race” deteriorating:

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And, before anyone tries to defend him by suggesting that this was just the prevailing view of his time, it wasn’t. In fact, more than a decade prior to the above quote, he had been lamenting the actually prevailing views of his time for forcing him to keep his patients alive:

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In fact, Bleuler, an incredibly influential psychiatrist (who also coined “schizophrenia”) was one of main reasons eugenics became a prevailing ideology. There were no Nazis pressuring him into this (as some argue may have been the case with Asperger); rather, he was the pressure.

What are we to make of all of this? On the one hand, again, I certainly do not want to defend keeping Asperger’s syndrome as a diagnostic label (I’m glad it is disappearing, for the reasons I gave above). And I also certainly do not want to tell people how they should identify.

But I do think we need more nuance on this issue. For, whatever Asperger did, and however bad it was, he was not an isolated case. Rather, if he was a eugenicist, then he was part of an ongoing eugenic tradition that has persisted from long before him, right up to the present day. With this in mind, airbrushing one or two specific individuals from history is far too simplistic (especially when it means the overnight enforced banning of various long-established disability identities).

What we do need is to develop more nuanced critical histories of neurodivergence; in order to both enhance our own empowerment in relation to the dark history of psychiatry, and to help combat the ongoing eugenicist programmes of today.

 

New Studies Have Unearthed Dr. Asperger’s Nazi Compliance: But The Important Question Regards How Much Has really Changed

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A new study by the historian Czech Herwig – the culmination of eight years of research – has decisively shown that Hans Asperger, who first developed the concept of autism as we know it today, was highly complicit in the Nazi eugenics programme. Amongst other things, he sent many cognitively disabled children to be euthanised, suggesting, in line with Nazi ideology, that they were ‘burdens’ to their parents. At the same time, a new book by researcher Edith Sheffer titled Asperger’s Children, coming out this May, argues that the term ‘Asperger’s syndrome’ should be totally given up. In her words ‘We should stop saying “Asperger.” It’s one way to honor the children killed in his name as well as those still labeled with it’. Regardless of whether we agree with this, it seems clear that Asperger was a very bad man.

The combination of these publications has been a shock for many in the autistic community. Until now, Asperger had widely taken to have been working in subtle resistance to Nazi eugenics. Most notably, Steve Silberman’s best-selling 2015 book Neurotribes held Asperger up as a sort of prototype neurodiversity advocates: a brave resister of Nazi eugenic ideology who baptised the category of autism more as a move of political solidarity than a medical advance. Also, his insights into autism were decades ahead of his time, and indeed, in many ways, very much in line with contemporary thinking.

As both an autistic person and researcher working on the ethics of autism, I am not so much interested here in simply condemning Asperger (although, this is now, quite rightly, being done, and needless to say I am glad that this new research has been published so we can do so). Rather, I am concerned with more practical and pressing concerns that arise in light of these new revelations. First: I want to reassess what went so very wrong with Asperger’s otherwise, as it hitherto seemed, sound reasoning in regards to autism (by which I mean his political philosophy rather than his scientific research).  And second, I am also interested in asking how much we have actually changed from his views today.

Why Asperger Seemed Good

Beyond his vital contributions to autism research, Asperger was until now widely thought of as a good person, and it is initially worth considering why. The key reason for this regards his initial 1938 paper on autism, in which Asperger argued against the popular eugenicist notion that undesirable traits could simply be erased from the human population.

In short, according to eugenicist theory, humans could exhibit desirable traits and undesirable traits, and the goal was to slowly erase undesirable traits from humanity through selective breeding. Against this notion, Asperger presented the case of autism. His argument came in two parts. First, he noted how autism came with important benefits, such as strong logical thinking and creativity, rather than just limitations. Second, he argued that the strengths and limitations he associated with the category were inextricably intertwined.

Given the combination of these points, Asperger concluded that autistic people were not just potentially useful members of society, but also that there should be no attempt to alter them – since the negative were so intimately linked with the positives. This seemingly allowed him to save at least some of his patients (i.e. those without further intersecting disabilities) from being killed.

According to Steve Silverman’s influential analysis, then, Hans Asperger’s aims and thoughts in the 1930s were a prototype for contemporary neurodiversity ideology, which – quite rightly – is fiercely pro-autism rights and staunchly anti-eugenics. In short, Asperger and neurodiversity proponents seemed allied in sharing a humanitarian response to what each takes to be as totalitarian ideology and its correlating drive to normalise and homogenise human life. In light of this, for Silberman, there seemed good reason to think of Asperger as a kind of patron saint of the neurodiversity movement.

What Went Wrong With Asperger’s Reasoning?

Asperger seemed to have some good ideas – those we have just mentioned – but clearly went deeply wrong in his thinking (and thus acting) somewhere else. The important thing, given his apparent overlap with much contemporary thinking, including with some neurodiversity proponents, is to ask precisely where he went wrong – lest we repeat the same mistakes.

Clearly, as Herwig covers, many factors were involved. Nonetheless, my suggestion is that the core error in Dr. Asperger’s thinking regards a certain way of thinking about both society and the value of human life. As the sociologist Zigmunt Bauman stressed in his book Modernity and the Holocaust, many atrocious Nazi policies arose in light of a ‘bureaucratic culture which prompts us to view society as an object of administration, as a collection of so many `problems’ to be solved, as `nature’ to be `controlled’, `mastered’ and `improved’ or `remade’, as a legitimate target for `social engineering’’. When combined with the Social Darwinist ideology of Nazi Germany in relation to the perceived ‘race hygiene’ needs of the Third Reich, this way of thinking led to an instrumental way of viewing human life. That is, humans were seen as valuable in relation to their perceived needs of the society, rather than simply being inherently valued as human beings.

In short,  then, whilst Asperger (rightly) resisted the notion that single traits could simply be erased from humanity, what is significant is that he (wrongly) still held on to this more general instrumental manner of framing and valuing human life. For his argument was not that autistic life should be valued as such, due to something like a deep love or care for autistic people. Rather, he only argued that his autistic patients should not be killed or altered as they could be instrumentally useful (for instance, he once suggested that they could become effective code breakers for the Nazi party)

The upshot of this was that, whilst this allowed him to save some autistic patients from being steralised or euthanised, he fully endorsed the killing of more seemingly heavily disabled patients. For on his manner of reasoning, they were not useful to society, and so were mere burdens to be killed.

A Problem with Neurodiversity?

Skip forward forty years or so and to the English-speaking world. Autism was by then widely established as a medical category, diagnoses were rising rapidly, and its dark history was at that time widely forgotten. The concept of the autism “spectrum” had recently been developed, and the autistic conditions were increasingly represented as hereditary developmental disorders associated with unique cognitive profiles. Huge amounts of research were being carried out with the aim of treating or “curing” the condition, and journalists were starting to write of the terrible autism “epidemic” that was unfolding across the world.

It was in this context that the neurodiversity movement arose. In the early 1990s, autistic self-advocates such as Jim Sinclair began to argue that autism was not a disorder that required awareness, but a difference that required acceptance and accommodation. They challenged the narrative that it was inherently tragic, and instead argued that autistic suffering was a product of unjust social conditions.

Building on early autism rights self-advocacy, in 1998 the term ‘neurodiversity’ was first used by the journalist Harvey Bloom an article in the Atlantic. He used this to indicate how different neurological types ‘may be every bit as crucial for the human race as biodiversity is for life in general […] Cybernetics and computer culture, for example, may favor a somewhat autistic cast of mind’. As a counter to the medical paradigm’s notion of autism as a disorder, proponents of neurodiversity began to argue that ‘neurological difference’ or ‘neurodivergence’ should be accepted and celebrated for the value it can bring to society.

Today, to be clear, the neurodiversity movement is utterly vital, given how terribly autistic people are pathologised, marginalised, and treated in a neurotypical society. In short, when it comes to the question of cognitive disability, neurodiversity proponents make up the vanguard of the world’s anti-fascists.

Nonetheless, in Blume’s framing – and indeed in the very analogy with biodiversity that the concept of neurodiversity is built upon – the implicit use of instrumental rationality remains. For he does not argue that neurodivergent life is simply valuable in and of itself; rather, he argues that we should value it because we have no idea when those who currently fall outside perceived economic needs will again become more useful for society. The key difference between this and Asperger’s take was that Asperger judged neurodiversity’s value in relation to the Third Reich, whilst Blume does in relation to human society more broadly.

Although not all neurodiversity  proponents do this, a good deal, at least, precisely rely on stressing how instrumentally useful autistic and other neurodivergent persons can be. For instance, it is not uncommon to see lists of (alive or dead) “geniuses” who were or are purportedly autistic to be shared among neurodiversity advocates, used in order to justify our worth. In turn, capitalists who have long excluded autistic people have recently started to look into finally giving autistic people jobs, due to increasingly seeing us as a potential instrumental resource to be drawn upon. Even Nick Walker, who I take to be one of the most nuanced neurodiversity proponents and a staunch anti-fascist, claims that a fundamental tenant of the neurodiversity paradigm regards how ‘diversity, when embraced, acts as a source of creative potential within a group or society’.

What Needs to Be Done?

It is important to again emphasise that the neurodiversity movement (from autistic self-advocates such as Walker to allies such as Silberman) provides an utterly vital challenge to the default exclusion and medicalisation of cognitive difference. Indeed: it is the critics of neurodiversity, who seek to eradicate autism, that are much closer to the apparent fascist and eugenicist sympathies of Asperger. And it is also true that neurodivergent people can, indeed, be useful for society in a huge variety of ways, so I certainly do not think people are wrong to correct stigma in this regard.

Nonetheless, it seems to me, to actually cultivate genuine emancipation would require learning to value autistic people intrinsically rather than instrumentally. Whilst it is understandable why neurodiversity proponents have so often resorted to emphasising our instrumental potential (since it has long been unduly denied), focusing so centrally on this – i.e. making it a central tenant of the ideology – leaves those considered to be less valuable behind. Moreover, even if we all were deemed to have positive net instrumental value, this line of argument nonetheless actively takes the focus away the focus from finding non-instrumental, intrinsic value in autistic modes of being.

In short – whilst it is terrible that we have to justify our continued existence at all – for those of us who want to effectively resist eugenicist ideology today, the worry here is that any reliance on instrumental rather than intrinsic value to justify autistic being will, although it may seem to help us justify our existence in the short term, actually reinforce a devaluation of autistic life over a longer period. Given this, something more radical will be needed for the neurodiversity movement to realise its emancipatory aims.

Are Autistic People Really too Sensitive? How the Intense World Theory Gaslights the Autistic Population

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The Scream, 1893, Edvard Munch.

 

In recent years the narrative has shifted from saying that autistic people feel too little – usually due to a purported empathy deficit – to saying we feel too much. This move has been widely celebrated: seen by many in the autistic community both as vindicating autistic self-advocates, and as a step forward for the neurodiversity conception of autism as a difference rather than a deficit.

To give a bit of initial  context, this shift began largely in light of decades of autistic self-advocates stressing that many characteristically autistic social problems are more the product of an overwhelming sensory world, rather than due to an innate inability to empathise. In light of this, neurotypical researchers eventually began to propose new cognitive theories of autism, and in turn to carry out studies to test various related hypotheses.

The most notable example of this is the intense world theory, initially proposed by Henry Makram and his co-authors in 2007. This theory claims that autism is a product of ‘hyper’ sensitivity rather than ‘hypo’ sensitivity as had been previously thought. In the words of Makram et al:

‘because a subset of cues are overly intense, compulsively attended to, excessively processed and remembered with frightening clarity and intensity. Autistic people may, therefore, neither at all be mind-blind nor lack empathy for others, but be hyper-aware of selected fragments of the mind, which may be so intense that they avoid eye contact, withdraw from social interactions and stop communicating.’

For them, this includes not just cognitive-perceptual differences, but also ‘hyper-emotionality’, leading autistic people to become, in their words, ‘trapped in a limited […] internal world’. In turn, subsequent research has seemingly supported this theory, such as a recent study which found precisely that autistic people don’t look others in the eyes, not due to social disinterestedness as previously thought, but rather due to sensory-overload – just as autistic people, and in turn Makram, suggested.

Quite understandably, such theories and the re-framing associated with them have been celebrated by autistic people as emancipatory and ‘ground-breaking’. Especially given how damaging the empathy-deficit myth is for the autistic population, and also given how this new framing seems to better fit with autistic lived experience, it is easy to see why so many embrace this new framing. Hence one recent article that is intended to support autistic self-advocacy, for instance, states: ‘As it turns out, the issue isn’t so much that autistic people are insensitive to the feelings of others. It’s more that their brains are oversensitive

Nonetheless, there is reason to be wary. As feminists have long argued, part of the relationship dynamic between the oppressed and the oppressor regards how the oppressor tends to systematically appropriate the vocabularies and claims of the oppressed under the guise of friendship. An yet the this is actually done in order to reinforce – albeit more subtly – existing power-relations. In the case of autism, this would mean neurotypicals in positions of power adopting some of the vocabularies or insights of autistic neurodiversity proponents in order to seem like supporters; yet to in fact use this process to produce a more subtle, and thus harder to spot and combat, pathologisation of autistic being.

In this regard, the first thing to note is that the intense world theory is still a pathology paradigm theory through and through. For on the one hand, how the theory is presented by Makram uses all the same unduly negative descriptions (‘compulsive’, ’impairments’ and so forth) and metaphors (the ‘trapped’ child, who needs ‘unlocking’ etc.) we see in all the other medical accounts.  On the other hand, it seems to have been widely overlooked how, within psychiatric theory, it does not matter whether a psychological difference is considered ‘hyper’ or ‘hypo’: either way, it is taken to be a matter of pathologically falling outside the norm. ‘Too much’ may be different to ‘too little’, but it is still considered just as inherently bad. Hence, although this challenges one pathology paradigm framing of autism, it only replaces it with another.

But perhaps the most worrying thing here regards how this new framing leads to autistic suffering being blamed on autistic oversensitivity. In this regard it is worth drawing attention to a form of psychological domestic abuse sometimes called ‘gaslighting’. What this refers to is the systematic undermining of the victim’s sense of reality in order to make them think the abuse is their fault rather than the fault of the abuser.

Very significantly, one of the core ways to do this is for the abuser to convince the victim that they are just too sensitive, meaning that any hurt they feel is not down to their abusive environment but rather due to their own inability to cope with the world. Hence, if the abuser, say, cheats on their spouse, the abuser can argue that it wasn’t a big deal, and that the spouse is just oversensitive, perhaps even overly jealous, thus dismissing the hurt and instead framing the victim as being the problematic one. In other words, subtle manipulation techniques are used to not just to victim-blame, but also to make the victim internalise and thus believe this – to the point where they finally lose their sense of reality and can be totally controlled by the abuser.

With this in mind, I am wary of all accounts that frame autistic suffering and disablement stemming from us being hyper-sensitive. Far from reversing it, all this does is make the pathologisation of autism more subtle, more hegemonic. In fact, the issue is that the sensory world is designed for the neurotypical, and so has by and large failed to accommodate the autistic sensory-style. That is, whilst it is true that we suffer from ‘too much information’, this stems from the neurotypical-centric way in which the world is organised  – not due to how we process the world as such.

Is Society Sick? Autism and the Extended Mind

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As readers of this blog will be familiar with, neurodiversity proponents argue that autism is a neuro-minority rather than a mental disorder. In short, they deny neither that categories such as autism indicate disabilities, nor indeed the various forms of distress associated with being disabled. Rather, it is that they locate this disablement and distress in society instead of framing it as stemming from a medical pathology in the individual. So an autistic person may, for example, have heightened sensory sensitivity; but they only become disabled in relation to the senses in a world that is not designed to accommodate for this different way of processing, thus leading them, say, to experience sensory overload.

Nonetheless, critics of the neurodiversity movement like to point to examples of what they (misleadingly, as we shall see) call “severe” or “low-functioning” autism in order to either limit or even dismiss the validity of the movement. Sure, they argue, even if some so-called “high-functioning” individuals seem different rather than disordered, and even if a few people given the “severe” label do advocate for the neurodiversity movement, these are not representative of the many who need 24 hour care, and have (so far) unsuccessfully been able to communicate anything more than very basic needs to those around them. In short, what these critics claim is that the minds of at least some of those deemed “severe” are so deficient that they are not just undeniably bad, but inherently so.

I want to suggest here that these critics of neurodiversity base their view on an increasingly outdated, and indeed unjustified, theory of what a mind is as such. I will call this the ‘atomistic mind theory’, and I take this (at least implicitly) to be the most widely held theory of the nature of the mind among the educated public today. In short, on this view, a mind stems from a brain, and is the psychological functioning that stems from that brain. Looked at this way, you might as well say that you are your brain. Or at the very least, the brain is the seat of the mind, and anything beyond the brain and its thoughts are not part of the mind as such.

This is a fairly widely held view of the nature of the mind, and one I am sure many readers of this blog will hold (including many neurodiversity proponents). But as the philosopher Andy Clark has long argued, this view is neither justified, nor able to accurately capture the phenomena of cognition. In short, he notes, many of our cognitive processes do not just take place within the broader world they are embedded in; rather, many forms of cognition actually wholly or partly rely on this outside world. As a recent commentator summarises, for example: ‘There [are] many kinds of thinking that weren’t possible without a pen and paper, or the digital equivalent—complex mathematical calculations, for instance. Writing prose [is] usually a matter of looping back and forth between screen or paper and mind: writing something down, reading it over, thinking again, writing again. The process of drawing a picture [is] similar.’

What Clark points out here is that, whilst the atomistic mind theory might frame these resources as mere external scaffolding for the mind, this vastly underestimates their importance. In fact, since the cognitive process that arise in light of them could not happen without this scaffolding, then this scaffolding is as integral to cognition as the scaffolding of the brain is.

Hence the superior alternative to the atomistic mind theory is Clark’s (and Chalmer’s) ‘extended mind theory’, which holds that the mind is not situated in the brain, but rather widely embedded in relation to many various resources, from the neural to the technological (for example, even as I type this article, the many tabs open on my browser are constituting my memory as much as my brain is). By contrast, it is a mistake to think that ‘whatever matters about my mind must depend solely on what goes on inside my own biological skin-bag, inside the ancient fortress of skin and skull.’ This belief, although still widely held, rests on unfounded assumptions as to what constitutes cognition – one that unduly discriminates against environmental (and sometimes bodily) resources in favour of just the neural resources.

Return here to the example of the so-called “severely” autistic person who needs a lot of help. Perhaps they need special technology to communicate (we might not even have invented this technology yet), and various technological resources in place to help them organise and plan their day. Perhaps they also need other people there around the clock to help them do things in various respects. And so forth.

On the one hand, according to the atomistic mind view, we should judge mental deficiency in terms of having to rely on external supports more than whatever we consider normal at the given time, since the need for external supports indicates that the mind (and brain) must be lacking. (In turn, if we then look at the neurology and it does indeed seem different to the norm, then this is taken to confirm that the mind was deficient – thus giving the impression of justifying the initial hunch.) Hence, on this view, it is hard to conceive of someone who needs 24 hours support, and so forth, to be anything but mentally disordered, or indeed “low-functioning”.

By contrast, however, without unduly discriminating against the extended aspects of the mind, there is no good reason to think that any given mind is deficient merely for having to rely on the environmental aspect of the mind more than the neural. For if we withhold from such discrimination, then this seem like a matter of different distribution rather than inherent dysfunction. It is just that some minds rely on the neural aspect more heavily, whilst others rely on the environmental aspect more heavily. The case of the so-called “severely” autistic person who needs a lot of help is, then – at least when they do get the help they need – a case of widely distributed cognition, rather than deficient cognition.

Crucially too, then, whether they get this help or not is a matter of social justice, not of medicine. Just as it would be a case of social (in)justice rather than medical pathology if some group (for instance, all those with an IQ between 85 and 90) were needlessly excluded from being given calculators at school due to discrimination. The extended mind theory thus helps us understand how the disablement of the autistic extended mind is a matter of power-structures having excluded this mind in various ways, rather than a simple matter of impaired functioning.

This leaves me with the following two thoughts. On the one hand, for as long as there are autistic people whose extended minds cannot function, then despite initial appearances, it is not the autistics who are sick. Rather, the sickness lies in the society that leads to the disablement of the extended minds of its minority members. On the other hand – and perhaps worse still – society’s need to project this pathology back onto the autistic person, rather than admitting its true societal nature, makes the sickness of that society seem much more insidious that it might initially appear.

New Research Suggests Social Issues are Down to Neurotypicals more than Autistics

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Picture by Joan M. Mas

Autism is seen, in popular representations, largely as a social and communication disorder. Formerly framed as stemming from an autistic lack of a “social instinct”, the current dominant idea is that something is deficient or missing in autistic social cognition. Often referred to as a cognitive deficit in “empathy” or “theory of mind”, much research on autistic social issues has focused on trying to clarify and detect this inside autistic brains and minds. The search for an elusive broken “theory of mind module” or “empathy mechanism” in the brain, and its ensuing cognitive manifestations, however, has led to conflicting results – with some scientists even concluding that autistic people feel too much empathy rather than too little.

Another view is that this is not simply an individual neuro-cognitive issue, but rather a wider social problem. Against the idea that autistic people have too much or too little anything, autistic neurodiversity movement advocates have long argued that the empathy problem is actually a two-way issue between neurotypicals and autistics, which only emerges when the line is crossed. Dubbed the “double empathy problem” by autistic scholar Damian Milton, this framing emphasises how communication and social encounters are always things that happen between people – meaning that any breakdown in communication is always relational and down to both sides, not just an innate issue with one or the other.

Not much empirical research has been carried out in this regard (most funding is directed to and by pathology paradigm proponents, who have no interest in pursuing a neurodiversity paradigm reframing of autism). However, a new collection of studies, published in Nature has given clear weight to the notion that autistic problems in socialising stem as much from the neurotypical side as the autistic side.

The three studies, each of which drew on different samples and used a variety of methodologies, initially all found that

‘observers’ first impressions of individuals with ASD engaging in real-world social behavior were found to be robustly less favorable than those of matched TD [i.e. neurotypical] controls […] these impressions were associated with reduced intentions to socially engage by observers’

In other words, they found that an important contributor to social and communication problems stemmed not from the autistic individuals, but rather from the neurotypical reactions, based on (by definition) exclusionary social attitudes and first impressions, which led to a decreased drive to interact with autistic individuals. That is to say, neurotypicals tend to decide, within moments of meeting autistic people, that autistic people are less worth socialising with than neurotypicals.

Building on this, one of the studies further compared evaluations between written communication and speaking in person. What it found was that autistic people were not rated negatively by neurotypicals when only their writing was assessed. Rather, it was how autistic people look, rather than the substance of what was said, that was the key factor in determining the neurotypical drive to exclude autistic individuals. This was further confirmed, note the researchers, when

‘a static image was sufficient for generating negative first impressions of those with ASD […] In contrast, first impressions of TD controls improved with the addition of a visual information’

In other words, an accompanying photo of an autistic individual had a negative affect on neurotypical perception of the value of the writer, whilst an accompanying photo of a neurotypical tended to have a positive affect.

Given this, it is no surprise that autistic people experience problems when it comes to social interaction. As the authors further clarify, their findings suggest that the issues autistic people face are in fact relational:

The reluctance of TD individuals to engage in social interactions with their ASD peers further limits the opportunities for individuals with ASD to practice their already fragile social skills. This can have a significant negative impact on the ability of socially aware and socially interested individuals with ASD to improve their social communication abilities and work toward more successful social integration

The practical implications of this, conclude the researchers, is that

If our goal is to improve social interactions for individuals with ASD, it may therefore be equally important to educate others to be more aware and accepting of social presentation differences, rather than trying to change the many interwoven factors of self-presentation that mark the expressions of individuals with ASD as atypical.

This fits precisely with the notion that the empathy problem goes both ways rather than from within autistic people, not to mention that this happens in the context of pervasive ableist norms and attitudes that seek to alter rather than accommodate autistic being. Given this, as many autistic individuals will surely testify, this important new research may, then, be vital in helping to show policy makers and the wider public that the key problem with regards to autism is not autism itself. Rather, as autistic self-advocates have long argued, it is neurotypical society and the ableism so deeply embedded throughout.

 

SCHIZOPHRENIA AS NEURODIVERSITY

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The term ‘schizophrenia’ stems from the from Greek words skhizein, which means ‘to split’, and phrēn, meaning ‘mind’. The initial thought was that the mind splits in some sense: not, as is sometimes thought, into multiple personalities; but rather into a fragmented and alienated personality, usually beginning in late adolescence or early adulthood. Beyond this, the condition is also most centrally characterised largely in light of psychosis, hearing voices, paranoia, a general sense of apathy, and flat or fluctuating moods and emotions. When all these characteristics emerge together in one person to what is deemed a ‘clinically significant’ level, that person is taken within institutional psychiatry to “have” schizophrenia.

In general, these traits are almost universally though to be inherently harmful deviations from the norm, and together they are taken to somehow destroy or at least radically damage the previously existing person. Given this, schizophrenia (and related ‘schizophrenic spectrum’ conditions such as schizoaffective disorder) are taken within both institutional psychiatry, and society more broadly, to be something terrible – tragic medical diseases to be combated with pharmaceutical drugs, institutionalization, and perhaps, one day, genetic engineering.

But the rise of the neurodiversity movement, which until now has focused mostly on the autism spectrum and other cognitive disabilities, gives reason to challenge this view of the schizophrenic spectrum. What neurodiversity movement proponents claim is that, even though the underlying neuro-cognitive differences captured by psychiatric labels indicate meaningful ways of being, the harm associated with these conditions is caused by society and ideology rather than due to anything like innate medical pathology. In light of this, neurodiversity movement proponents argue that what they call ‘neurominorities’ – autism, dyslexia, and so on – are natural and legitimate, albeit oppressed or excluded, ways of being in the world.

In particular, neurodiversity proponents stress the need to embrace one’s neuro-type as an inherent part of one’s identity, instead of seeing it as an external pathology that is separate from one’s essential selfhood.  Autistic neurodiversity proponents, for example, find the notion that you can have autism, rather than be autistic, highly problematic – much in the way that it is problematic to speak of gay people as ‘people with sexual orientation disturbance’, which was precisely how homosexuality was characterized within institutional psychiatry until the 1980s. In this regard, neurodiversity proponents stress the need to drop person-first language (e.g. ‘person with autism’) in favour of identity-first language (e.g. ‘autistic person’). Part of the thought behind this is that, in order to genuinely accept oneself, and in turn live a good flourishing life, seeing one’s neurocognitive style as an essential and valuable part of one’s selfhood, rather than an added pathology, seems vital.

Notably, although some groups of schizophrenic persons have resisted instituaitonal psychiatry in various ways, for example by trying to demedicalise hallucinations, the neurodiversity movement calls into question whether schizophrenic selfhood too, might be re-conceptualised and reclaimed in this way. That is, it points towards the possibility of not just demedicalising schizophrenia’s associated traits, as the ‘hearing voices’ and ‘mad pride’ movements have already started to work towards, but rather towards a more radical and affirmative embrace of the categorization as part of the personal and political identities of schizophrenic persons.

Of course, on the face of it, it might seem utterly bizarre to claim that schizophrenia could be seen as a neurominority rather than a disorder. After all, there is nothing good about hearing harsh and invasive voices, or thinking that people are out to get you. And we have all seen tabloid stories of schizophrenic spectrum persons harming themselves or others. In short, then – as many schizophrenic spectrum persons and their families will testify – those who end up being given this label do indeed encounter terrible amounts of distress, and many would do anything to return to their pre-schizophrenic selves.

Nonetheless, all this does not, in and of itself, necessarily mean that being on the schizophrenic spectrum is inherently harmful. It may still be both that the distress stems from cultural and social rather than neurological factors, and that we dismiss schizophrenic selfhood due to a particularly restricted conception of what it means to be a healthy person (or indeed have a self at all). If this is the case, then it may be that seeing schizophrenia as a natural part of human neurodiversity is preferable to seeing it as a medical disorder after all.

One recent scientific study which supports this hypothesis, for example, comes from the Stanford anthropologist Tanya Luhrmann and colleagues. By examining the experience of hearing voices (or auditory hallucinations) in different cultures, they found that the whether this was associated with distress varied hugely. More specifically, in North America, voices were experienced as harsh and invasive strangers, and so caused a huge amount of distress to those who heard them. By contrast, In Africa and India, voices were much more likely to be experienced as playful and friendly.

Very significantly, the key factor in this difference, Luhrmann and her colleagues note, was actually the socially constructed ideal of the self that dominated in each society. In North America (as with the rest of the West), an atomized, individualistic conception of self dominates, meaning that hearing outside voices was conceptualized and experienced as an external threat to autonomy and selfhood. By contrast, given that more collectivist conceptions of selfhood dominate in Africa and India, it did not matter if some internal voices are not one’s own, since others are already part of the self anyway – and so the voices were much less likely to be harmful, and were sometimes even helpful.

Interestingly, the claims of this anthropological study chimes with those of Rutgers psychologist Louis Sass, who has argued over the past three decades that post-modern Western societies hugely amplify the kinds of problems associated with the schizophrenic spectrum. For Sass, because postmodernism is, like the schizophrenic spectrum, characterized by a hyper self-reflexivity, fragmentation, alienation, and an ever increasingly individualistic yet decentered self, the two can accentuate each other in a way that makes the schizophrenic way of being manifest as more problematic than it otherwise would have. In other words, it may be pervasive aspects of our post-modern culture, and the conception of selfhood that accompanies it, that amplifies the problems schizophrenic spectrum persons seem to be prone to, rather than these problems being most centrally biomedical in nature.

If the claims of researchers like Sass and Luhrmann are even partially right, then it seems that it is social rather than neurological factors that are key in explaining the distress experienced by those on the schizophrenic spectrum. And in particular, it seems that historically contingent conceptions of selfhood – that is, pre-scientific, normative, and ideologically laden notions regarding what it means to be a person – are a key factor in the harm associated with being schizophrenic. Given this, it may be that learning to see schizophrenia as a natural part of neurodiversity may actually be better for schizophrenic persons in terms of the possibility of self-acceptance and living good, thriving lives.

Indeed, as the scientific medical literature itself indicates, it is precisely the case that schizophrenic spectrum persons tend to flourish, like everyone else, only when they come to accept and affirm themselves for who they are. As one schizophrenic man, Simon Champ, writes, it was precisely such an affirmative self-narration that

‘has given me the most precious thread, a thread that has linked my evolving sense of self, a thread of self- reclamation, a thread of movement toward a  whole and integrated sense of self, away from the early fragmentation and confusion I felt as I first experienced schizophrenia.’

In contrast to seeing schizophrenia as a pathological destruction of the self caused by an internal dysfunction, then, it may help to consider working towards a more inclusive and diverse understanding what it means to be and develop as a self. In particular, we may need to acknowledge that for some manifestations of human neurodiversity more than others, it is natural for selfhood to fragment and then resynthesize in new and creative ways (and to be more active in generating images and voices, perhaps especially in response to often harmful social environments).

In fact, we all do this to some extent: situations that cause a rupture in our existence – from life-changing tragedies to falling madly in love – can often cause selfhood to fragment, in some sense, and in turn to need some time before it can realign and grow. This is a natural reaction, and part of the human condition. In line with this, instead of automatically seeing them as deviations from ordinary selfhood, more schizophrenic kinds of fragmentation and self-other relations might also one day be seen as a natural ways for selfhood to adapt and relate to (sometimes extreme) circumstances – part of the continual path of an ever changing self existing in an imperfect world, rather than the destruction of one self replaced by a broken self.

Of course, I am not denying that those on the schizophrenic spectrum currently suffer terribly, nor even that this way of being comes with its own unique set of challenges and limitations. Clearly, many do experience terrible distress, and it is also important to acknowledge that in some extreme cases of, say, paranoid psychosis or severe depression, medication may be helpful (just as all humans need medication at some point in their lives). The point, rather, is that all human ways of being come with their own challenges and limitations: it is part of the human condition to suffer, to experiences crises of selfhood, and to change as life happens to us. And in the case of the schizophrenic spectrum, there is good reason to at least entertain the possibility that the most terrible distress might actually caused by life-events, society, and ideology, rather than due to some inherent medical pathology.

Indeed, once we add to this that, as anti-psychiatrists such as Thomas Szasz have long stressed, those given the schizophrenic spectrum labels are routinely stigmatized, institutionalized, drugged, and repeatedly told they are inherently sick and broken, it is no wonder that so many become paranoid, depressed, and apathetic. Just as with other oppressed or excluded minorities who are thereby more prone to experiencing mental distress, so too it should not be surprising that schizophrenic spectrum persons encounter similar issues in an equally systematic and terrible way.

What I am denying, then, is that those given these labels are obviously inherently broken, sick, or pathological; and I am also denying, vehemently, that it helpful to cast them as such. Rather than seeing the schizophrenic traits as something that destroys the self, we need to work towards understanding how, for some neurodivergent selves, these kinds of self-relation is a natural reaction to the various struggles encountered in the human condition more broadly, as well as to more specific oppressive social conditions. The schizophrenic spectrum, in other words, must be welcomed into the arms of the already blossoming neurodiversity movement – making it, as with autism, a way of being with its own culture and affirmative political identity.