Milton’s heedlessness of his double empathy theory in critiquing PDA
Damian Milton has become a prominent as an AA (actually autistic) autism theorist. He is celebrated by many within the autism community for his double empathy theory (more of this below), which he summarises on National Autistic Society’s website as:
“Simply put, the theory of the double empathy problem suggests that when people with very different experiences of the world interact with one another, they will struggle to empathise with each other. This is likely to be exacerbated through differences in language use and comprehension.” (Ref)
Milton, however, has gone on to attack the validity of PDA’s classification as an autism spectrum condition. He has voiced much of this criticism through Twitter, but also organised a conference whose specific goal was to discredit the validity of PDA (ref). He summarises the arguments given against PDA in his conference in an unpublished paper held by Kent Academic Repository:
"a critique of PDA narrative and theory […] examining the PDA behaviour profile and the issue of external as opposed to internal demands. PDA theory is then compared and contrasted with other potential explanations and theories which may relate to this phenomenon - namely ODD, Attachment Disorder, Executive Functioning, Monotropism and Autistic Inertia.” (Ref)
The proposition that PDA may be the result of attachment disorder harks worryingly back to Kanner’s 1940s parent-blaming theory that autism is caused by refrigerator mothers. (Ref)
When actually PDA people, such as myself, have attempted to tell Milton of our lived experiences; that our PDA avoidance is not trauma-rooted; and that we feel the term “pathological” perfectly describes our brand of demand avoidance, he has refused to listen, claiming that, as he was once offered a PDA diagnosis, he is qualified to theorise about PDA. The inference being that he places no value on the words of people who actually identify as PDA; and that he assumes he knows better than we do about what we feel and experience.
An example of Milton’s anti-PDA public tweets, dated 18th September 2021, is:
“…some would question the need to pathologise, and certainly the lack of accounting for trauma.”
Although Milton has remained cautious in voicing his anti-PDA views on Twitter, a fellow autistic person (who I won’t give Google clicks to by naming, because they have systematically bullied and trolled people identifying with and/or supporting PDA) stated on Twitter on 5th June 2018 that they:
“has [sic] been involved critiquing PDA for years. I am joined [sic] twitter because he [Milton] asked for help arguing against PDA supporters.”
In other words, Milton seems to have recruited a troll to attack PDA on Twitter, whilst keeping his own academic hands pristinely clean. All this took place whilst Milton’s Twitter profile identified him as Autism Knowledge and Expertise Consultant for National Autistic Society (NAS).
Major, ongoing distress within the PDA community from Milton’s Twitter assault moved me, in July 2018, to take action to protect the community through creating a change.org petition asking NAS to silence Milton’s attack on PDA. The campaign, entitled “www-autism-org-uk NAS to prevent their head of autism knowledge and expertise publicly refuting PDA” went viral, receiving thousands of signatures within 24 hours. It was clear that myriad people were sick to death of Milton’s ongoing assault on PDA.
Scarily, the next morning, Milton threatened to take legal action against me for slander (legally it would have been libel, but let’s not quibble!) Why could he not have instead offered to discuss the concerns I raised? I understand that he felt attacked by my, now viral, petition, but could he not have responded by saying something like, “Oh, I see lots of people have been very upset by my critique of PDA. I’m really not happy with you posting this petition against me. I’d like it removed ASAP, but I can see from its popularity that there’s a real issue here. Can we talk?” But, no, Milton’s only response was to threaten legal action. I removed my petition partly from his threat, and partly because the NAS offered me a meeting to discuss their stance on PDA in relation to him being their Autism Knowledge and Expertise Consultant. It should be noted that, in the subsequent meeting, NAS told me they had never consulted Milton about PDA. Milton updated his Twitter profile description to, I felt testily, state that it should be obvious that his views on Twitter don’t represent NAS (so why had he previously brandished his NAS “Autism Knowledge and Expertise Consultant” status in his Twitter profile?) His current Twitter profile states “This is a personal page and views tweeted are my own and are not representative of any of the organisations I have worked with.” (Ref)
Although I’ve since met Milton face to face, and communicated with him via email, he’s persisted in his anti-PDA stance, and continued to refuse to take on board the views of those of us who identify as being PDA. Believe me, I’ve really tried to communicate with him in a friendly, non-aggressive way, but he’s point-blank refused to engage in further discussion.
So what exactly is Milton’s problem with our PDA neurotype? Why is he so hellbent on trying to discredit our identity? Whilst his ongoing, outright attack on PDA has mystified those of us who actually identify as being PDA, https://criticalneurodiversity.com/ sum up his stance in a 2020 blog article entitled “Pride, Pathology, and Prejudice: the bio-politics of PDA”:
“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.” (Ref)
Ian Hacking (quoted in London Review of Books on 17th August 2006) is cited in the same criticalneurodiversiy.com blogpost:
“[seeing] PDAers as passive victims of the “autism industry” […] 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.” (Ref)
A deeper delve into Milton’s stance on autism can be found in his double empathy theory (On the ontological status of autism: the ‘double empathy problem’, published in 2012). This paper has been celebrated within the autism community as a seminal, actually autistic work proving the existence of discrimination by neurotypical people against autistic people. Spectrum news summarise Milton’s double empathy theory thus:
“an emerging line of work supports a more nuanced look at the social abilities of autistic people. Proponents of an idea called the ‘double empathy problem’ believe that communication breakdowns between autistic and non-autistic people are a two-way issue, caused by both parties’ difficulties in understanding.” (Ref)
It feels worthwhile to explore his much-lauded double empathy problem theory. (Ref) Milton discusses assumptions of social reality in the early part of his paper:
"The ‘theory of mind’ and ‘empathy’ so lauded in normative psychological models of human interaction refers to the ability a ‘non-autistic spectrum’ (non-AS) individual has to assume understandings of the mental states and motives of other people. When such ‘empathy’ is applied toward an ‘autistic person’, however, it is often wildly inaccurate in its measure. Such attempts are often felt as invasive, imposing and threatening by an ‘autistic person’, especially when protestations to the contrary are ignored by the non-AS person doing the ‘empathising’."
However, Milton seems to have failed to consider his own argument with regard to his critiques of PDA. To use the template of his terminology, non-PDA AS people (such as he) have assumed “understandings of the mental states” of PDA people. Further, following his refusal to take on board the experiences of people identifying as PDA, his attempts to explain away our condition have felt (again using his own terminology) “invasive, imposing and threatening” by we PDAers, “especially when protestations to the contrary are ignored by the [non-PDA AS] person doing the ‘empathising’.”
Milton next chooses to quote himself as a leading expert:
“The ‘double empathy problem’: a disjuncture in reciprocity between two differently disposed social actors which becomes more marked the wider the disjuncture in dispositional perceptions of the lifeworld – perceived as a breach in the ‘natural attitude’ of what constitutes ‘social reality’ for ‘non-autistic spectrum’ people and yet an everyday and often traumatic experience for ‘autistic people’. (Author’s concept and definition)”
I think that it could now be borne in mind that Milton is failing to empathise with PDAers because of the disparity between his non-PDA autistic “social reality”, and the reality we PDAers experience ourselves.
“To expand on the above definition, the ‘double empathy problem’ refers to a breach in the ‘natural attitude’ (Garfinkel 1967) that occurs between people of different dispositional outlooks and personal conceptual understandings when attempts are made to communicate meaning. In a sense it is a ‘double problem’ because both people experience it, and so it is not a singular problem located in any one person.”
In the case of Milton’s critique of PDA, I’d say the fault lies with him, as a non-PDA autistic person, refusing to listen to people identifying as PDA when we try to explain that our reality is different to theirs.
Let’s continue our survey of Milton’s double empathy problem text:
“Rather, it is based in the social interaction between two differently disposed social actors, the disjuncture being more severe for the non-autistic disposition as it is experienced as unusual, while for the ‘autistic person’ it is a common experience (Milton 2011b)… If one can apply a label on the ‘other’ locating the problem in them, it also resolves the applier of the label’s ‘natural attitude’ of responsibility in their own perceptions and the breach is healed perceptually, but not for the person who has been ‘othered’ (Said 1978)."
It seems though that Milton’s rationalisation of PDA is rooted in his own rigid understanding of what autism constitutes. PDAers have certainly not been “healed” by proclamations that PDA doesn’t exist. Instead, it is Milton, and his fellow PDA critics, who have been “othering” us by bullheadedly refuting the existence of the neurotype with which we identify.
The next part of Milton’s double empathy problem hypothesis covers what he terms “internalised oppression and psycho-emotional disablement”:
“The imposition of one’s views upon another and the subsequent internalisation of this view can be seen to be a form of internalised oppression, where the negative connotations of the normative model of pathological difference become a self-fulfilling prophecy (Becker 1963)”
I think a key phrase to consider here is, “the negative connotations of the normative model of pathological difference”: Milton clearly does not like the term “pathological” being applied to autistic people, and this may explain part (if not all) of his hostility to our PDA neurotype (for which the “P” stands for pathological). However, in the same sentence, he states that imposing “one’s views upon another and the subsequent internalisation of this view can be seen as a form of internalised oppression”. So (disregarding for a moment Milton’s objection to the “pathological” component of our PDA neurotype’s name) he has asserted that imposing one person’s view onto another’s can cause internalised oppression. Let us now refresh our minds that Milton has continually sought to impose his view that PDA doesn’t qualify as a distinct autism subtype onto those of us who identify as PDAers. I’ve examined the damage that this type of dismissal does to PDAers in an earlier blogpost https://www.freepda.co.uk/2020/03/the-emotional-impact-of-dismissal-on.html Let’s read on:
“For those who resist, such self-identifications and attempts to normalise – however ‘well intentioned’ – are experienced as an ‘invasion’ of the ‘autistic’ ‘lifeworld’ by people wanting to modify one’s behaviour to suit their purposes and not one’s own (Milton & Lm 2012).”
As we’ve seen, those of us who identify as PDA, as well as parents who’ve identified PDA in their children, have been subjected to an angry, wide-scale “invasion” of our “lifeworld” by people wanting to modify our behaviour: namely non-PDA autistics (like Milton) who wish to shout us down for failing to accept their own view that PDA doesn’t exist.
The next part of Milton’s double empathy problem paper, sub-headed “Autism and knowledge production”, finishes with the statement:
“Autism is not just an ‘invisible disability’ to many in terms of a behavioural definition; the ‘autistic voice’ is made ‘invisible’ within the current culture of how knowledge is produced about ‘autistic people’, often excluding empowered ‘autistic advocates’ from the process.”
My, and other fellow PDAer’s experiences, are that current autism culture claims the right to entirely discount the existence of PDA (while our actual PDAer voices are ignored and excluded from their debate).
Milton’s conclusion to his double empathy problrem paper is:
“The [stigma against] ‘autistic people’ is both biologically and socially derived, and yet is also historically and culturally situated in discourse […] and leads to the ‘double empathy problem’ between differently disposed social actors. Such divergences of perception are inevitable to a greater or lesser extent. So it is true that autistic people often lack insight about non-AS perceptions and culture, yet it is equally the case that non-AS people lack insight into the minds and culture of ‘autistic people’”
I think we can rephrase his words to contextualise his ongoing attack on PDA: “The stigma against PDA people from autistic people is socially derived […] and leads to the ‘double empathy problem’ between differently disposed social actors. Such divergences of perception are inevitable to a greater or lesser extent. So it is true that PDA people often lack insight about AS perceptions and culture, yet it is equally the case that non-PDA people lack insight into the minds and culture of ‘PDA people’” In other words, Milton’s own argument that non-autistic people have failed to empathise with autistic people, aptly applies to his own inability to listen to, and empathise with, the experiences of PDAers.
“One could say that many autistic people have indeed gained a greater level of insight into non-AS society, and more than vice versa, perhaps due to the need to survive and potentially thrive in a non-AS culture. Conversely, the non-AS person has no pertinent personal requirement to understand”
Again, his words can be jigged to clarify his personal discrimination against PDA: “One could say that many PDA people have indeed gained a greater level of insight into non-PDA AS society, and more than vice versa, perhaps due to the need to survive and potentially thrive in a non-PDA AS culture. Conversely, the non-PDA AS person has no pertinent personal requirement to understand”
So, as we can see, Milton appears to have failed to apply his own double empathy theory when critiquing our PDA neurotype. He has failed to empathise with our PDAer perspectives by refusing to hear our voices, and assumed to know all about us already, basing his claimed sovereign right to critique PDA in the fact that he’s autistic (whilst simultaneously not accepting, or acknowledging, our actually PDAer arguments that PDA is not the same as all autism).
My continued hope is that Milton will finally grasp that he has, I believe, unwittingly subjected our PDA community to the exact same prejudice and discrimination he describes the autism community having been subjected to by neurotypicals. As we’ve seen, he has placed no value on the words of people who identifying as PDAers, and assumed he knows better than we do about what we feel and experience. Come on Mr Milton, instead of threatening legal action against me or refusing to listen further, why not do the decent thing and admit that you’ve treated us, the PDAers, in the same way that that you’ve accused neurotypicals of treating autistics? We, the PDA community, are extremely marginalised and vulnerable. You have encouraged the non-PDA AS population to demonise us. Please acknowledge that there is a “pertinent personal requirement to understand” PDA, and now to rectify the harm you’ve done to us.