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.

 

 

 

 

 

 

 

12 thoughts on “Pride, Pathology, and Prejudice: the bio-politics of PDA

  1. Great article. I think an important aspect of our PDAer “pathological” avoidance is that it causes us to to resist things we want to do (like eating a treat, or removing a coat to cool down), as well as those constrained by Thatcherite culture.
    If you are intertested in your blog being included in a new Free PDA project, please email me.

    Liked by 1 person

  2. Hi Sally Cat, thank you for this important point. I do think there is some room for understanding avoidance of things one actually wants to do on my framing. These would be in cases where there is a dissonance between pros and cons, or from something like post traumatic stress. For instance, consider a child who genuinely wants to go to school because they like learning, but they get anxious and avoid the demand because they were once bullied at school due to being perceived as “weird”. In such a case there’s no contradiction between framing the problem as stemming from the society, yet it also then becoming a case of them now avoiding things they do want to do. I don’t know how many such instances could be framed in that way but I suspect some could at least.

    Thanks also for the kind offer, I don’t have your email address but do feel free to email me if you want to ask me to use any of my work.

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    • Hello.
      With regard to PTSD and learned experience causing avoidance: yes, it certainly does. PDA avoidance, however, is independent of this. A good example might be feeling hot wearing a jacket in the summer, but feeling unable to remove it because the act of doing so feels repellent. Another is eating fruit, I enjoy it when I eat it, but I feel a prevented as if by a force-field. House-hold chores can terrify me, but if I tell myself, it’s OK, I don’t have to do them, I tend to find myself miraculously motivated to carry them out shortly afterwards (I had removed the demand by telling myself I didn’t have to it). There are many, many other examples too.
      I’ve sent you an email.

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  3. Great article. I think Woods might be listening and changing his views somewhat.
    The main reason I reject PDA however (and I’m someone who formally self-identified ad such) is that it divides autistic people in exactly the same way as the Aspergers label does. We are all autistic and sub-dividing us like this is not something I care for anymore. Especially when the edges of these labels are fuzzy and with so much overlap.

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    • Thank you for this important point, its interesting to hear that you shifted from one to the other. I feel similarly that sub-typing can be harmful or divisive, which is why I tend to call myself simply “autistic”. However its important to acknowledge that some find it helpful, for instance for accessing relevant services. And I think its important to acknowledge people’s disability identities. Personally I suspect the PDA construct has untapped radical potential as a construct, but only time will tell.

      Note that I did include a link to Woods’ later work and acknowledge that he had changed his approach to make it more inclusive and less controversial.

      Liked by 1 person

    • PDA is a means to subdivide the autistic population – that is the purpose of a sub-type after all.
      But the Asperger’s label is not just a subdivision… is divisive in the way it does that for a couple of reasons.
      1 – Asperger’s association with Nazi ideology through Hans Asperger, which is problematic at the very least
      2 – Asperger’s divides autistics based on cognitive ability / IQ where it is felt by society that those with Asperger’s are considered to be ‘better’ than those that are ‘really autistic’. This is not the case with PDA where PDA traits are seen across the spectrum at all functioning levels.

      The purpose of using a PDA label is to give a better outcome for the individuals involved by helping them understand themselves and giving them the right tools and strategies to live their best life – not to give them better outcomes than other parts of the spectrum which is how Asperger’s is often seen.

      (For the record, I mainly use the term autistic and use PDA when specifically discussing issues caused by PDA traits or where support is needed for the PDA traits rather than generally autistic ones.)

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      • Sorry but I’ve seen PDA used in ways that imply that those with PDA are more intelligent than other autistic people. So in essence in exactly the same way Aspergers does as per your point #2.

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  4. Hello. I am Emily, a self-identified PDAer with PDA children, one diagnosed. I am a Neuropsychology academic and I really want to talk to you about your article. Thank you for writing a balanced view and adding the insights of one of our community. It is so important. I feel you have missed some key points surrounding what the nature of the neurotype is and the difference regarding the nature of the demand avoidance. This is all new stuff so I am not surprised but I would really like to discuss it with you. Would you like to interview me for a follow up article?

    Like

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