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


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.