Simon Baron-Cohen, Neurodiversity-lite, and the History of Eugenic Thought

Sir Francis Galton by Charles Wellington Furse, given to the National Portrait Gallery, London in 1954. [A middle-aged white man wearing a suit, sitting at a desk that has an open book on it]


In recent days a lot has been written about the Spectrum 10k project, which seeks to develop an autism DNA database that will then be shared with other researchers. The focus of discussion has been on how many autistic people are worried by the very real threat of eugenics. Among other issues, many autistics have expressed concerns about the Principle Investigator, Simon Baron-Cohen, a professor at the University of Cambridge, who wrote in a 2009 article that he would be “delighted” at a prenatal autism test.

Others have defended him by noting how, in the same article, he also raised concerns about the mass termination of autistic foetuses, on the grounds that this might erase talents associated with autism. His defenders argue that this shows he is anti-eugenics. If this response is valid, it might support the notion that the Spectrum 10k project is anti-eugenics and pro-neurodiversity, as they have indicated in a personal note (September 4th) signed by Baron-Cohen himself.


Which interpretation is more convincing? Since there are different ways of understanding eugenics, a lot of it will come down to how ‘eugenics’ is defined, or which kind of eugenics we are talking about. Before I get to this, I want to caveat that I do not think Baron-Cohen has ever come close to supporting Nazi-style eugenics (i.e. mass extermination of children and adults based on notions of racial hygiene). It is important to note here that Baron-Cohen is Jewish, which would make it highly inappropriate to refer to him as a ‘Nazi’, as some have. Nonetheless, most 19th and 20th Century eugenicists were not Nazis: eugenic theory and practice emerged in Britain, after all, and it has since had many proponents by people across the political spectrum. What I shall argue that much of Baron-Cohen’s reasoning, methods, and commitments are more consistent with the British eugenic tradition instigated by Francis Galton—and, strangely, inspired by Cambridge University men both then and now.


Baron-Cohen’s views on Curing Autism


A lot of attention has been drawn to Simon Baron-Cohen’s 2009 article on the potential pros and cons of developing a pre-natal test for autism. I will stick with this article here, since it makes a clear and concise argument that is highly relevant to the worries raised by members of the autistic community.


Although he is writing about the possibility of an autism prenatal test, Baron-Cohen begins by noting that “In 2007, three quarters of applicants to read maths at Cambridge were male.” Part of what Baron-Cohen is interested in is the questions why “males [are] so attracted to studying maths? And why, in over 100 years of the existence of the Fields Medal, maths’ Nobel Prize, have none of the winners have ever been a woman?” At the same time, he further notes: “Similarly, people with autism are much more likely to be male […] It seems as you move to the extremes of mathematical excellence, autism becomes more common” (Baron-Cohen 2009, np).


Rather than considering the complex power imbalances that could explain these disparities, Baron-Cohen suggests the explanation is largely genetic. Here he nods towards his own research (see here) on Cambridge students and their their family members noting that “Fathers and grandfathers of children with autism are more likely to work in the field of engineering, a field that needs good attention to detail and a good understanding of systems, just like mathematics. Siblings of mathematicians also have a higher risk of autism, suggesting the link between maths and autism is genetically mediated” (Baron-Cohen 2009, np).


The reason Baron-Cohen is concerned with this is that a prenatal test to terminate autistic foetuses might soon become available. While he is “delighted” at the prospect of such a test helping “social development”, he worries that


“If it was used to ‘prevent’ autism, with doctors advising mothers to consider termination of the pregnancy if their baby tested ‘positive’, what else would be lost in reducing the number of children born with autism? Would we also reduce the number of future great mathematicians, for example? […] Caution is needed before scientists embrace prenatal testing so that we do not inadvertently repeat the history of eugenics or inadvertently ‘cure’ not just autism but the associated talents” (Baron-Cohen 2009, np)


In warning against “inadvertently repeat[ing] the history of eugenics” Baron-Cohen seems to be indicating the horrors of Nazi Germany, and setting up his position as being against such eugenics. Still, while I see no reason to doubt that Baron-Cohen is against Nazi-style eugenics, it is legitimate to ask whether his views are in line with other eugenicists.


Francis Galton and the Cambridge Men


‘Eugenics’ is a term coined in 1883 by the Victorian polymath, and half-cousin to Charles Darwin, Francis Galton. He defined it as “the science which deals with all influences that improve the inborn qualities of a race” (1904). As I wrote about recently, he developed this approach by combining statistical conceptions of normality, psychometric and biometric testing methods, and Darwin’s theory of evolution by natural selection. Indeed, Galton himself was the first to propose many of the methods now widely used in research on autistic people, ranging from twin studies to psychometric intelligence tests. It was the widespread adoption of Galton’s paradigm that led to the ranking of neurodivergent people into different functioning levels, depending on how far from the norm they fall on cognitive tests.


Yet, Galton’s thinking about eugenics began long before he developed these methods or read Darwin’s work on evolution. Indeed, in his 1909 autobiography, Memories of my Life, Galton traced his interest back to his time at university, where – in a striking parallel with Baron-Cohen’s article from a century later – he recalls being “immensely impressed by many obvious cases of heredity among the Cambridge men who were at the University about my own time” (Galton 1909, p. 288). Yet this was far from the only similarity with Baron-Cohen’s work.


Initially, to provide evidence for this, Galton developed a new method, whereby he looked at the eminence of the family trees of Cambridge students, and used a statistical analysis to determine the frequency of high achievement. It was based on this new approach, first developed in 1865, as Galton later recalled, that “I soon found the power of heredity to be as fully displayed in every other direction towards which I turned” (Galton 1909, p. 288). This method – which began the tradition carried on in Baron-Cohen’s work on talent in autism families – formed the basis for Galton’s 1869 book Hereditary Genius, where he first ranked different individuals, families, and races via recourse to a statistical norm. And in turn this formed the basis for his later founding of eugenics in the 1880s.


Further like Baron-Cohen, Galton overlooked social explanations, in this case the fact that working class men and women of any class were excluded from studying at Cambridge for social and political reasons. For him the explanation was that men from certain families were there because of hereditary ability, even if nurture and social imbalances played some role too. This was important, as Martin Brookes writes in his 2004 biography of Galton, Extreme Measures, since “The Hereditary conclusion was convenient for Galton” because “Eugenics – the next phase of his argument – was entirely dependent on it.” Without the notion that inborn variation and rank were hereditary, he could not justify controlling the population through eugenic intervention (2004, pp. 147-8).


Finally, as was also echoed in Baron-Cohen’s argument, Galton was also wary of eliminating all forms of madness (the general term for mental disorder at the time), since he thought that the traits underlying some forms of madness might contribute to talent under other conditions. As he wrote in his 1883 book Inquiries into Human Faculty and its Development:


‘Madness is often associated with epilepsy; in all cases it is a frightful and hereditary disfigurement of humanity, which appears, from the upshot of various conflicting accounts, to be on the increase. The neurotic constitution from which it springs is however not without its merits, as has been well pointed out, since a large proportion of the enthusiastic men and women to whose labour the world is largely indebted, have had that constitution, judging from the fact that insanity existed in their families” (p. 43)


Hence, Galton thought that eugenics should be practiced carefully, so that we did not lose the ‘merits’ associated with underlying ‘neurotic’ constitution.


Neurodiversity-lite and Contemporary Eugenics

It is worth noting that there have been broad changes in how eugenics is theorised, promoted and practiced since the time of Galton. For instance, for Galton, eugenics should be based on government interventions, such as providing wealthy people with funds to help them reproduce, and segregating disabled people. Government interventionist eugenics became less acceptable to promote after Nazi Germany, so today, it is very much based on free market ideology and framed in the rhetoric of individual choice. Another difference regards the notion of racial degeneration: the worry that the human race, or specific human races, were reverting to a lower level of cognition overall. While that theory was popular in Galton’s time, it is now seen as pseudo-scientific, and does not drive most mainstream defenders of contemporary eugenics.

But beyond these differences, eugenicist thought has still pervaded much disability discourse, and Baron-Cohen’s 2009 argument fits seamlessly with contemporary approaches to eugenics. Baron-Cohen’s genetic determinism, his method of justifying this by focusing on achievements that run in families and then seeking to explain these with reference to hereditary cognitive ability, and his concern with preserving what he sees as hereditary talents while erasing problems, are all firmly based in the Galtonian tradition. It is a striking parallel that both Galton and Baron-Cohen each began by looking at an overrepresentation of talented men at Cambridge, and thought that this was best explained as a product of natural selection.

With all this in mind, I will end with a quote from Jacquiline den Houting, who warns against ‘neurodiversity-lite‘:

Misinformation about neurodiversity is perhaps compounded by the proliferation of autism researchers, professionals, parents and even autistic people adopting what has been described as ‘neurodiversity lite’ […]: employing the rhetoric of the neurodiversity movement without fully understanding the assumptions that are the foundation of the neurodiversity paradigm. While it is encouraging to see the wider autism community embracing the concept of neurodiversity, in order to truly facilitate the evolution of the neurodiversity movement, it is vital that all its proponents – and, just as importantly, critics –have a deep and nuanced understanding of its key assumptions.

I agree with this assessment, but would add that neurodiversity-lite is also consistent with the eugenic tradition. While it is often liberating to emphasise neurodivergent strengths, valuing the reproduction of what are framed as heritable talents rather, or more centrally, than the inherent worth of neurodivergent life is precisely what the neurodiversity movement arose to resist.

For me, it is not enough to talk about promoting autism rights and seeing it as part of neurodiversity if the focus remains grounded within the Galtonian paradigm and its associated research programmes. If anything, as I’ve argued for many years now, it is just as important to resist neurodiversity-lite as it is to resist the standard medicalised approach; for the former, far from being the antithesis of the latter, is in fact only its most recent variation.

The Unselected

Geralt/Pixabay

To explain why I identify as ‘unselected’, it will help to begin with an imaginary (if all too familiar) scenario:

Well-Meaning But Problematic Neurotypical Researcher, Professor of Controversial Ideas at the University of OxBridge, stumbles across a demonstration by Neurodivergent Neurodiversity proponents, where activists are raising awareness through a megaphone. First, he hears a bit about how scientific ableism has routinely portrayed Neurodivergent cognition as inherently deficient maladaptions, or broken mechanisms, and as a threat to Neuronormative Supremacy. A bit later he also hears one of the Neurodivergent Activists point out that, contrary to ableist representations, Neurodivergent people can, if supported properly, do pretty much anything Neurotypicals can, from being political leaders, to researchers, to whatever else. Some of them even say their disability can be a ‘gift’ or a ‘superpower’ in the right circumstance, and emphasise that conserving neurodiversity is beneficial for society as a whole.

Well-Meaning But Problematic Neurotypcial Researcher is shocked by the ableist injustices he hears of, and he decides to dedicate himself to being a Neurodiversity Activist. To promote what he thinks of as a Neurodiversity perspective, he begins writing articles and giving talks arguing that in fact, some Neurodivergent people – like Temple Grandin, he notes – have naturally selected neuro-cognitive strengths that make them just as good, in some instances superior, to Neurotypicals, at certain things such as inventing or computing. For this reason, he argues to anyone who will listen, Neurodivergent should be supported, to help cultivate their strengths.

In this scenario, it seems to me, Well-Meaning but Problematic Neurotypical Researcher not only fails to help the neurodiversity cause. Rather, he actively harms it by taking up space and promoting what is, at best, a distraction, that ultimately misses the point of what the demonstration was about.

What exactly went wrong? While it could be understood as a matter of epistemic vice (his presumptiveness and lack of epistemic humility are likely part of the issue), here I want to focus on the conceptual mistakes that are implicit in his understanding.  

For me, the key problem: Rather than rejecting the underlying Social Darwinist paradigm of scientific ableism, he implicitly accepts the paradigm by basing his argument on the same assumptions. That is, by assuming that we mean neurodivergent people should be supported because we sometimes have strengths that may be the product of natural selection, he is still making a case that is based on a comparison of different neurotypes through a Darwinian lens.

One way of understanding the error is that Well-Meaning but Problematic Neurotypical Researcher has mistaken a case of Neurodivergent activists promoting more empowering narratives on neurodivergence (regarding our gifts or superpowers), for an argument about why Neurodivergent people deserve disability justice in the first place. Or to put it another way, he mistakes

  1. an expression of how things look from a neurodiversity paradigm perspective for
  2. an argument for why neurodiversity justice should be supported

My point: Once someone living in a world structured by ableism begins to adopt anti-ableist commitments, they will, among other things, increasingly begin seeing positive aspects of neurodivergent and otherwise disabled peoples or cultures that had previously been obscured and devalued by ableist ideology. They will also likely find these positives important to point this out, to correct overly negative ableist narratives. And so they will sometimes talk about strengths, gifts, superpowers, benefits for group functioning, or whatever else.

Importantly, though, the ensuing insights here are the expressions of having adopted a neurodiversity paradigm lens, they are not meant to be an argument for thinking that neurodivergent people are as worthy as neurotypical people in the first place. Indeed, the whole project of thinking of different neurotypes as being better or worse than each other, and the framing of this through a Darwinian lens, is a big part of what underpins scientific ableism.

In short, while I do think it is important to emphasise neurodivergent power, the argument is not that some neurodivergent people have strengths and therefore should be supported rather than devalued. The focus on neurodivergent power is, in most instances, not meant to be an argument at all. It is just that having adopted an anti-ableist perspective, it becomes easier to see through the fog of ideology that obscures anything good when it is neurodivergent.

And this explains why I prefer to identify as ‘unselected’. Of course, I do not know if the traits I value about myself are the product of selection or not. Perhaps some of my traits are products of natural selection, while others may be closer to bi-products or random mutations. (Some may stem from broken mechanisms, and if so I like them anyway.) But the point is, I do not really care if any neurodivergent traits were useful in prehistoric cave settings or if similar people invented primitive tools. It is likely that a great many neurodivergent traits were not selected at all. And so, when it comes down to it, I would rather identify as unselected, both for myself and in solidarity with others who may also be unselected. And I hope others can, with pride and dignity, identify as unselected too.

Executive Functioning as Ideology

Someone with good executive functioning, probably. Copyright: Mohamed Hassan/Pixabay

Executive function is a general umbrella term for various cognitive functions, most notably those related to planning, impulse control, working memory, and for monitoring action. Executive dysfunction, by contrast, is a term used to describe cases where executive functioning of the individual seems to have broken down in some sense, leading to impaired functioning in day to day life.

I am interested in executive malfunctioning because it is associated with neurodivergence more broadly rather than a specific diagnosis. Things ranging from autism, to Tourette’s, to ADHD, have all been theorised as manifestations of executive dysfunction. By the same token, strong executive functioning is symbolic of the neurotypical, or at least the neurotypical of late capitalism in global North.

Consider the metaphors used to explain executive functioning. The difference is perhaps most often clarified with reference to how companies function. As clinical psychologist Tony Attwood (2007: 232) writes in his book The Complete Guide to Asperger’s Syndrome: “think of a chief executive of a large company, who has the ability to perceive the ‘big picture’, can consider the potential outcomes of various decisions, is able to organize resources and knowledge, plan and prioritize within the required time frame, and modify decisions based on results.” For Attwood, this symbolises the neurotypical with good executive functioning. By contrast “Such executive function skills may be significantly delayed” among neurodivergent populations (ibid.)

Importantly, not only is the metaphor of the successful manager or executive used to explain the difference between executive function and neurodivergent functioning. The personal traits associated with executive functioning are also literally the traits associated with success in office jobs and managerial roles. Consider, for instance, how webmd.com, in its summary of executive functioning, states that executive function helps you ‘manage time’, ‘pay attention’, ‘plan and organise’, ‘avoid saying the wrong thing’, ‘remember details’, and ‘multitask’. The way it reads is more like a general list of skills required for getting a job as an office manager than a naturally grouped cluster of cognitive mechanisms.

Perhaps it should not be surprising that executive functioning is symbolic of the contemporary neurotypical. After all, what better for the ideal human of neoliberal societies than to be a manager who controls a successful company? Fitting in like this, all without causing too much trouble for the dominant power structures, is valued as supporting the system. The neurotypical is thus symbolised as the competent manager. Neurodivergence – the autistic whistle-blower, or the chaos energy of ADHD for instance – is seen as a problem hindering the smooth functioning of the system, and which therefore needs to be controlled and fixed.

This brings me to how, today, many neurodivergent people have internalised this discourse, and refer to whatever they happen to find hard personally as a problem with their executive functioning. I do not want to dismiss the ways in which this can be useful or accurate (I sometimes describe my own daily struggles as a matter of executive dysfunction). But it is worth considering how someone like Foucault may have seen the internalisation of such medicalised discourses as a form of self-monitoring, imposed to help maintain the status quo.

Looked at this way, the irony is that executive dysfunction is framed as a failure in ability to self-monitor, yet by adopting and internalising the concept of executive dysfunction, we dysfunctionals are expressing an ability to self monitor. If this is so, however, there is a sense in which executive dysfunction may be not so much a failure in the ability to self-monitor, but rather an ideologically obscured ability to do so.

Neoliberalism and the Biopolitics of Psychological Formulation

The Scream (1893), a painting by Edvard Munch expressing feelings potentially in need of formulation.

In recent years, a variety of medical professionals who often identify as ‘critical’ psychologists, psychiatrists, and psychotherapists seem to have reached a consensus. This holds that psychiatric diagnosis is scientifically invalid and harmful, and that person-centred psychological formulation should take the place of diagnosis. This has become especially influential in the UK, where large, mainstream professional bodies such as the British Psychological Society and the Critical Psychiatry Network now promote psychological formulation as a superior alternative to the use of diagnostic classifications.

The critical psych argument begins with a critique of psychiatric diagnosis. In contrast to bodily medicine’s scientifically grounded constructs, they argue, psychiatric classifications are made by committee decision, and are based on normative assumptions rather than scientific discovery. To add insult to injury, these scientifically invalid medicalised constructs are used to control those who dissent from the norms and requirements of neoliberal economies. Diagnosis is thus analysed as part of the neoliberal privatisation of mental distress that depoliticizes in order to reinforce social control.

Based on this analysis, critical psychs increasingly suggest using psychological formulation as an alternative. Formulation, which is already routinely used alongside diagnosis, focuses on attempting to understand the individual and their emotional problems in context, co-constructing a narrative about the individual’s psychological distress. This is touted by criticals as providing a scientifically rigorous and epistemically liberatory way of evaluating individual problems that avoids the epistemic harms of imposing diagnosis. Indeed, leading formulation proponent Dr Lucy Johnstone writes, it may be that “formulation has the potential to be not just an alternative, but an antidote, to psychiatric diagnosis and its potentially damaging effects” (p. 13). For many proponents, formulation will be part of the basis for a ‘paradigm shift’ away from individualistic medical models, towards a more humane, contextualised understanding of mental distress.

There is much that is at least partly right in this critique of psychiatry. Unfortunately, however, the critical psych argument runs into problems of its own. We begin to see these problems when we consider the framing of all psychiatric diagnoses as uniquely problematic because they are determined by committees, in a bit more detail.

The first thing to note is that this narrative presents a misleading picture of medical knowledge production. In fact, all medical diagnoses, from viruses to cognitive disabilities, are normative constructs voted for by committees. While it is true that committee members often have vested interests or biases, this is not unique to psychiatry. Moreover, despite its significant problems, committee decision is still seemingly the best way scientists have so far developed for classifying things, whether in astronomy, biology, or psychology. So while there are many problems with psychiatric diagnoses, the mere fact that they are decided by committees is not one of them.

More importantly, diagnostic categories are not made solely by psychiatrists through the act of voting. Rather, prior to and following any given committee vote, they are continually co-created in a broader context of power and resistance from those who are classified. The influence of such activist influence is most clearly seen in the many instances where self-advocates have successfully lobbied to include, exclude, or change diagnoses. This happens with every revision of the major diagnostic manuals, and can clearly be seen, for instance, in this recent account written by prominent neurodivergent self-advocates who managed to significantly influence over how they were classified in the DSM-5.

Beyond these more obvious and direct cases of co-construction, the philosopher Ian Hacking has detailed how such classifications are constantly subject to ‘looping effects’, whereby both classifiers and those classified continually negotiate the nature and boundaries of the classifications. Here Hacking follows Foucault, who argued that wherever there is power there is also resistance. From this Foucauldian perspective, psychiatric constructs are in part expressions of dominant ideologies, but they are also in part expressions those who continually interact with and change them through acts of neurodivergent subversion and agency.

Once we bear these factors in mind, not only are the agency and history of disabled self-advocates erased on the critical narrative regarding diagnosis, it also becomes clear that psychiatric classifications have a lot more in common with formulation than the criticals acknowledge. Both are co-constructed between medical professionals in positions of power, and those who are being described, and both continually change in response to inputs from both sides. Of course, it is true that there is room for ideological bias and coercion to corrupt such processes. But both diagnosis and formulation are equally open to these problems, and the idea that psychologists can somehow transcend such risks is a dangerous illusion.

If anything, there are reasons to think that completely rejecting all diagnoses in favour of formulation could itself be epistemically harmful. One of the main differences is that formulation puts more power in either one medical professional or a small team of professionals, whereas diagnostic categories are developed in the public sphere and draw on a much larger, more diverse pool of voices to attempt (with mixed results) to minimise bias. While this leaves plenty of problems in our diagnostic categories, there is some reason to think that comparatively private teams with direct power over individuals may be less accountable than the much more public revision processes of the diagnostic manuals. So similar problems will surely emerge.

It is also vital to note that disability classifications are often necessary to recognise groups of people who share similar forms of marginalisation and oppression. For instance, while it is true that autism is a shifting construct that has little direct medical utility, it does help us recognise an important aspect of social reality, and the shared forms of disablement that autistic people face. For this reason, such classifications can be epistemically emancipatory as political categories used for shared organisation and resistance. In fact, the autism classification has precisely been much more successfully used as an emancipatory political construct than it has as a medical construct, much as is typical of many disability classifications.

This is important to consider because it shows where the critical position goes from helpful to epistemically harmful. They are right to helpfully point out that psychiatric classifications can sometimes be epistemically harmful, especially when they are presented as brain diseases. But by wholly denying the viability of things like ‘autism’ or ‘ADHD’ as valid disability constructs that grant recognition to certain ways of functioning outside the norm, criticals end up holding a position not unlike those who purport to be ‘colour blind’ with regard to race. That is, they end up seeing only individuals with problems, but will fail to understand these problems because they erase the broader context of the marginalised groups they are part of and the shared forms of discrimination specific to members of these groups.

Consider a partial analogy with the politics of autism and neurodiversity. People who claim to be ‘colour blind’ about race tend to see the acknowledgement of race constructs as divisive, and argue that we should just accept individuals as they are regardless of race; but in doing this they end up reinforcing epistemic violence that erases the reality of racism and the experiences, voices, and cultures, of people racialised as black or brown. Similarly, as one leading anti-diagnosis critical psych, Dr Sami Timimi, says of autistics who reclaim the autism classification: doing this only “perpetuates the “us” and “them” dynamics and further solidifies the individualisation that feeds neoliberal politics. [In fact we] are all, each one of us, unique and therefore we are all neurodiverse.” Yet Timimi’s position – that ‘we are all neurodiverse’, only serves to erase autistic voice, culture and solidarity, and reduces disabled groups to suffering individuals.

Because of this, I do not think that there is much radical or emancipatory potential in wholly moving to psychological formulation over diagnosis. Both run into much the same problems, and can also have similar benefits, in different contexts and for different people. Still, the distinct utility of disability classifications largely resides in their providing the grounds for solidarity, culture, and community understood in the context of the minority disabled group; by contrast the formulation approach seeks to elucidate individual suffering precisely in the absence of this minority group context. Given this, any move to completely erase broader diagnostic categories in favour of default formulation, rather than being the solution to the privatisation of stress, is better understood as neoliberal individualism’s latest and fullest expression.

Pathological demand avoidance: Individual, societal, or both?

adorno

Theodor Adorno

I wrote recently about Pathological Demand Avoidance (PDA). In particular, I focused on the possibility of reclaiming PDA as a positive label, arguing that while worries about the role of bio-politics in the construction of PDA are legitimate, existing analyses may nonetheless have overlooked the positive possibility and actuality of reclaiming PDA. My argument emphasised how Milton’s notion that PDA could be seen as an expression of autistic agency might be taken as supporting the PDA identity rather than undermining it. I did this by looking at PDA as a kind of resistance to neo-liberalism, and its unhealthy demands on us. It is worth reading the prior analysis before this one, as this post builds on the explanation and arguments developed there.

I received some helpful emails from PDAers since publishing the blog. I was particularly interested to hear of of PDAer Emily Wilding’s reclamation of the PDA construct as a “Persistent Drive for Autonomy”, which I think is consistent with the above analysis, if we consider how a neo-liberal services economy hinders and undermines the autonomy of those who do not fit its norms and structures. Helpfully, several noted that I failed to cover certain core aspects of PDA in my brief analysis. Most importantly, I overlooked how PDA doesn’t just involve avoiding the demands specifically associated with a Thatcherite culture. Rather, it is associated with the avoidance of all societal demands, including many things the PDAer actually wants to do. This could be anything from eating nice food to going to an event that was eagerly looked forward to. And yes, it is hard to see how such behaviours could fall in the scope of my previous analysis.

Still, I wonder if there’s further room to view the identity in a more humanising light even given the factors I overlooked in my first post. The background for my case comes from the philosopher and critical theorist Theodor Adorno (1903-1969). In his 1951 book Minimal Moralia, Adorno wrote about how, if a psychiatrist could analyse society as a whole, they might see “sickness proper to the time to consist precisely in normality”. Writing prior to the rise of the specific neo-liberal form of capitalism I discussed in the previous post, Adorno’s critique is of capitalism, and how it structures all our relations, more broadly.

More specifically, Adorno depicted a capitalist society in which everything was now is some sense bad or wrong. For under capitalism, individuals are ‘dragged along as an appendage of the process of material production’. Society as a whole, on this view, thus forms a kind of totality that is bad, and in turn this badness filters through to all the specific parts of society – even those things we like and want – tainting them with its wrongness. Even something so inane and nice as “slippers are monuments to the hatred of bending down.”

If this sounds unreasonably pessimistic, consider some contemporary examples: I want to go on holiday, but flying is bad for the environment; I want to eat the sandwich, but factory farming is hideously cruel; I want to order a present for my niece, but Amazon is a corrupt, tax-avoiding multi-national that mistreats its workers. Its hard to find something I want that is not tainted by the badness of a sick society.

Indeed, even if I think it is good to try and resist such badness, I will still find the taint. Say, I want to organise a boycott against Amazon; yet, it turns out to be impossible to do so without using a web space that is hosted on servers owned by Amazon, thus generating more profit for them. Or, I organise a climate protest; but it turns out that for the protest to happen, many people have to drive there, which means more money in the coffers of the oil companies who are largely responsible for the problem I want to protest. Even positive resistance that may have a good effect on the whole, retains at least an element of being tainted, feeding back into and reinforcing the capitalist whole.

Some find Adorno’s analysis too pessimistic (fair enough). But for those of us who are inclined to agree, this might further  open a less pathologising, more humane, way of understanding PDA. For in a society where everything is tainted, and in some sense bad, then it is perfectly reasonable to wish to avoid all of its demands. This may be to greater or lesser extents, and will different depending on the context – but it also holds for those things the PDAer genuinely wants to do. As with the examples I gave above, it is hard to find things we even genuinely want to do that aren’t tainted.

How far can this analysis be taken? It’s important here to acknowledge that the response of PDAers is more often a matter of impulse than rational or reflective deliberations. (Its not like all PDA children are constantly worrying about the ecological impact of, say, eating milk chocolate over the vegan option.) So it would overlook, perhaps risk trivialising, the lived experiences of many PDAers to depict PDA primarily as being some kind of rational or reflective resistance. Still, even if such an avoidance is an impulse, what we can say is that it may express functional instincts. The instinct to question, to resist demands that have a foul taint, as it were. Put simply, on the Adornian analysis, some individuals may instinctively scent the sickness of society, much as one can, say, instinctively mistrust someone based on a general feeling without being able to fully rationalise the mistrust.

In saying this, I certainly don’t mean to overlook how such can be disabling, anxiety inducing, and harmful for the PDAer, in a way that one may understandably wish to be free of. Indeed, as Adorno himself notes, “how comfortless is the thought that the sickness of the normal does not necessarily imply as its opposite the health of the sick, but that the latter usually only present, in a different way, the same disastrous pattern”. In other words, it is perfectly conceivable that PDA is in part a reaction against a sick society, yet still retains elements of that sickness itself — as, by Adorno’s logic, all of us do.

Do Neurotypicals Have Intact Moral Agency?

empathy-4292845_1920

Geralt/Pixabay

Do autistics have intact moral agency? A claim forwarded in Deborah Barnbaum’s book The Ethics of Autism (and echoed by several other philosophers and psychologists) is that we don’t. On this analysis, neurotypicals are presumed to have intact moral agency.  By contrast, it is argued that autistics are comparatively less capable of ethical comportment and decision making, and thus that we aren’t full moral agents.

While there’s a few variations of this argument, the basic reasoning typically goes something like this:

1)     autistic individuals have an empathy deficit

2)     empathy is a necessary component of moral agency

3)     therefore, autistic individuals have deficient moral agency

To give a bit more detail, the first premise is based on the notion that autism can be defined via a deficit in what is variously called Theory of Mind or cognitive empathy. This regards the cognitive module taken to be necessary for processing the social world, including for understanding the minds of others. On a medical deficit model autism has often been associated with a broken empathising module, meaning that autistics individuals struggle to understand other minds.

In turn, the second premise is based on a long tradition in moral philosophy (dating back to David Hume in the 18th Century) which holds that our capacity for being moral agents is based in significant part on our ability to empathise or sympathise with others. For, it is argued, we need to understand others to know what is good for them, and in turn act on this.

If we accept both of these premises, then its easy to see why philosophers often think that autistics won’t have fully intact moral agency – to some extent at least, and depending on the level of impairment. According to Barnbaum, who forwards the most extreme version of this argument, autistic individuals wholly lack moral capacity, to the point where we are excluded from the moral community of humanity. And even on far less extreme analyses such the that offered by Nathan Stout, it is still claimed that autistic individuals struggle with the “fine-grained features of moral judgment” at least. Trawl the philosophical literature on autism and its easy to find many variations of this argument.

But things aren’t this simple. One huge problem with this is that the evidence for the empathy deficit hypothesis is both shaky and rooted in ableist assumptions. Hence any reasoning based on this hypothesis will also rely on the same flaws. In turn, a more interesting problem regards how this argument overlooks the way in which problems in social understanding are actually a two way street between autistics and neurotypicals. This has been explored, most notably, by autistic sociologist Damian Milton, who refers to this as the “double empathy problem” – thereby stressing that is isn’t simply a matter of autistic deficit but rather a relational dysfunction that arises when the divide is crossed.

Building on this, in a 2019 article I hypothesised that its not just that neurotypicals struggle to empathise with autistics; its also the case that many autistics often can fluently empathise with other autistics. This has since been supported by various studies that have precisely found that autistic people do seem to have be better at socialising with other autistics than neurotypicals are with autistics (see, e.g. here or here). Once we take this into account, I think there’s room for reversing the traditional analysis – up to a point.

My hunch is that, there’s good reason to think that if autistics do have some kind of limitation as moral agents, then it’s also likely the case that neurotypicals have the same kind of limitation. Yet vitally, each will mainly be present for the other, rather than it being the case that these are somehow fixed deficits that apply irrespective of context. In other words, in so far as there’s a double empathy problem, and in so far as moral agency does require the ability to empathise, its likely that there’s also a double moral agency problem between autistics and neurotypicals.

If anything, there’s stronger reason to think that neurotypicals have limited ability for moral agency when it comes to how to treat autistics than the other way around. The reason for this is that we live in a world structured by ableism and disableism, with neurotypicals occupying a comparatively privileged and enabled position in contrast to comparatively disabled and devalued autistics. Because of this, most neurotypicals don’t have to think about autistic needs: doing so is not part of the social role of the neurotypical. And since autistic needs are routinely overlooked in society more generally, its likely that neurotypical individuals will have limited epistemic access to the needs of autistic individuals. But this kind of additional epistemic limitation will arise for socio-political more than biologically-based reasons.

In support of this, there’s plenty of evidence that autistics are not given due moral recognition in a predominantly neurotypical world. For instance, autistics are routinely discriminated against and abused.  Terrifyingly, when neurotypical parents kill their autistic children, they often encounter sympathy for doing so once it becomes know that their child was autistic. This has become so systemic that the Autistic Self Advocacy Network has for some years helped organise an annual vigil for disabled children murdered by their parents. Indeed, when Barnbaum wrote her book on the ethics of autism,  and argued that all autistic foetuses should be terminated, the book won awards from neurotypical organsiations instead of being condemned. While all this is linked by the ableist power structures, part of the explanation for each individual case may regard the limited ability of neurotypicals to empathise with autistics, thus diminishing the moral agency of the former when it comes to dealings with the latter.

Overall, its far from clear that autistics do lack moral empathy in the way philosophers routinely claim. But there is some reason to think that autistics and neurotypicals may have limited moral agency when to comes to recognising the moral dignity and worth of the other – and in this specific regard, there’s reason to think that neurotypicals are more deeply disabled than autistics.

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.

 

 

 

 

 

 

 

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, racist eugenicist 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 arguably part of the reason 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 part of 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.