Thread by @Richard_Autism

This is a thread discussing why an alternative for “Pathological Demand Avoidance” (PDA), “Persistent/ Pervasive Drive for Autonomy” are inherently ableist.

First I need to define what is ableism. I will be referring to definitions I gave in my first talk on PDA 5 years ago, which is arguably the seminal Critical Autism Studies talk on PDA.

Link to the slides below:
researchgate.net/publication/32…

Ableism is defined as:
“a network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human..."

"...Disability is cast as a diminished state of being human.”
Campbell 2008, p153.

Previous quote is the text highlighted in blue in the below image.

Link to Campbell 2008 is below:
tandfonline.com/doi/full/10.10…

There are two arguments how “Persistent Drive for Autonomy” is inherently ableist. First is based on how the UK is Western neoliberal culture.

In the 2018 talk I mention these points:
Neoliberalism dominates UK culture and society, where each person is meant to be an independent self-regulating individual.

In neoliberal times it is up to each person to seek help to fix any faults they have, so they can be an economically productive person.
Neoliberal market ideology is rampant, focusing on short term attainment.

If one takes “Persistent Drive for Autonomy” at face value, that a person has constant drive for Autonomy. It means is naturally independent self-regulating person, who thrives navigating through unrestrained market forces to be highly economically productive.

In this case “Persistent Drive for Autonomy” implies a person is not disabled at all, but is ideally equipped to live in 2020s UK Culture. A person with “Persistent Drive for Autonomy” is the “POSTER BOY” of 2020s UK Culture.

Hence, “persistent Drive for Autonomy” intrinsically upholds beliefs, processes and practices which are projected as the perfect species-typical for which disabled people are cast as diminished state of being human.

I accept that describing “Persistent Drive for Autonomy” as non-disabled above, is differently to how it is described by “PDA Profile of ASD” advocates.

Yet, if one accepts that a “Persistent Drive for Autonomy” is highly disabling, it then leads to the other argument in how it is intrinsically ableist.

If a person with “Persistent Drive for Autonomy”/ “Need for Control”, It suggests that other people have a lesser “Drive for Autonomy”/ “Need for Control”. I find this highly problematic, when most-all people benefit from being in charge/ having control.

I discuss this in this article below:
researchgate.net/publication/33…

So, one it seems nonsense to claim anyone has a “Persistent Drive for Autonomy”/ “Need for Control”.

Even if one accepts that. It literally casting a person’s “Drive for Autonomy”/ “Need for Control” as an excessive way to the point their “Persistent Drive for Autonomy”/ “Need for Control” is impaired.

A person’s “Drive for Autonomy”/ “Need for Control” becomes pathological when "the disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.“
(APA 2013, p21).

So by describing themselves as having a “Persistent/ Pervasive Drive for Autonomy” a person is literally saying that aspect of themselves is “pathological” in nature; i.e., a diminished aspect of being human. Thus, is conforming with Campbell’s definition of Ableism.

This makes sense as “Persistent/ Pervasive Drive for Autonomy” is another name for PDA, which assumes PDA is a “Profile of ASD”. We know that “PDA Profile of ASD” is being used as another functioning label.

Next I will use a case study as an example.

First a trigger warning.

Filicide, i.e., caregivers killing their child.

Link to the case study is below:
rte.ie/news/2019/1022…

In the above case study, as caregiver in Ireland killed their young autistic child after discovering PDA online and the caregiver became convinced their child had PDA. The report describes PDA as being a severe form of autism (which is a controversial & strongly contested claim).

Pertinent quotes:
“In the 48 hours up to the killing she had carried out internet searches on suicide and mothers killing their autistic children. She had been convinced her child had a more severe form of autism when in reality the diagnosis was at the mild end of the spectrum.”

“The court heard the woman had become obsessed and was devastated at her child's diagnosis. While the diagnosis was one of mild or borderline autism, she was convinced her child had a much more serious form of the condition and that she would not get adequate supports.”

“The woman's partner said she had convinced herself that their child had PDA which does not respond to the usual treatments for autism...."

"...Although the psychologists had told them their child had at the very worst mild autism she had also said the profile PDA did fit and she would send on her report.”

One can see from those quotes PDA is described as a terrible form of autism, which does not respond to usual autism treatments. I wonder who made those bold claims to the caregiver?
It matters as the bold claim PDA does not respond to typical autism treatments is blatant nonsense

https://twitter.com/Richard_Autism/status/1653873794929360897

Moving back onto topic.

If one sees the below diagram, it shows how one can conceptualise PDA’s demand-avoidance as a continuum with hyper fawning as the other extreme.

Vitally, the diagram shows how one can model PDA having different severity levels, with “PDA Profile of ASD” equivalent to “Severe Demand Avoidance”/ “Help4Psychology PDA”. There other thresholds for PDA in the PDA literature, which are lower than “pervasive” demand-avoidance.

Why do I mention these different PDA thresholds?

We know that differences between such functioning categories are often arbitrary & subjective. That where a person often presents in such continuums is frequently dependent on the person’s age, situation & stress levels.

“Persistent/ Pervasive Drive for Autonomy” as a term is being used to erroneously claim that descriptions of PDA by persons like myself is not the same as “PDA Profile of ASD” advocates.

Therefore peoples like myself do not have PDA, as it does not conform with their preconceived expectations of what PDA is.

Point I am making is that advocates of “Persistent Drive for Autonomy” are using it to claim that my demand-avoidance, my “Drive for Autonomy”/ “Need for Control” is different to theirs, and thus is less impaired when compared to “Persistent Drive for Autonomy”.

Shows “Persistent Drive for Autonomy” is part of a network of beliefs, processes % practices that produces a particular kind of self that is projected as the perfect, species-typical and therefore essential and fully human. Disability is cast as a diminished state of being human.

This makes sense when considers how “PDA Profile of ASD” is constructed.

"As a result of this broadening of the way that autism and the autism spectrum are seen, the contributors’ view is that PDA is currently best understood as a ‘profile’ (or cluster of traits) on the autism spectrum."
PDA Society 2022, p3.

Above quote is from PDA Society's apparent research report pretending to be clinical guidance, p3.

Link to where above quote is from is below:
pdasociety.org.uk/wp-content/upl…

If one accepts that claim, that PDA’s features are now part of the autism spectrum. That means that PDA’s features now form many continua of features within within autism. Please see the below diagram how “PDA Profile of ASD”’s features compare to “More straight forward autism”.

“PDA Profile of ASD” is literally being described as a “complex presentation” (PDA Society 2022, p4), which means autistic persons without “PDA Profile of ASD” are therefore not complex, therefore must be “easy”/ “straightforward”.

It is this use of “PDA Profile of ASD” why I created the below diagram which shows “PDA Profile of ASD”, “Profound Autism” & DSM-5 autism on axes of IQ versus inverse functioning ability.

Those with “PDA Profile of ASD” are viewed as more impaired than autistic persons without “PDA Profile of ASD”.

“Persistent/ Pervasive Drive for Autonomy” is part of the same processes which are used to categorise autistic persons as other functioning categories we have moved beyond.

Finally, there are examples of internalised ableism, where some autistic persons who have internalised discourse of “PDA Profile of ASD” have attacked autistic persons, like myself who are critical of “PDA Profile of ASD”.

Some specific examples below of two images by SallyCat of internalised ableism from “PDA Profile of ASD” autistic advocates in action.

I am unlikely to use “Persistently/ Pervasive Drive for Autonomy” in my PDA scholarship for these and other reasons.

Other reasons include is that persons like myself and Damian Milton who can be attributed with PDA, but choose not to be strongly attached to construct dislike the name and prefer alternative terms for PDA.

If PDA is a distinct diagnostic category, then it is probably also seen in non-autistic persons. Non-autistic persons with PDA, along with those who are not strongly attached to PDA, such as myself, have equal rights to PDA diagnoses, research, and support.

Most pertinently, non-autistic persons with PDA are likely to be the majority of persons with PDA, it remains to be seen what their views on PDA terminology is.

Participatory research tends to go with majority persons preferences on such matter as terminology, like for example using identity first language to describe autistic persons.

Lastly, I think “Demand-Avoidance Phenomena” is a better name, which does not prejudice people’s thinking about what PDA might be, while validating that people are often experiencing very real difficulties.

There might be other factors which contribute to why I think “Persistent/ Pervasive Drive for Autonomy” is intrinsically ableist, but it is most of them.

There are a couple of further points I would like to add the thread, but they are on the same topic of how differences between "PDA Profile of ASD" & other types of demand-avoidance seem arbitrary & subjective.

First one refers to how some are claiming differences between "PDA Profile of ASD" & other types of demand-avoidance. In terms how some are claiming PDA demand-avoidance is different to other types of demand avoidance.

An example of someone claiming these differences would be Riko Ryuki "PDA vs ADA.  The difference between PDA and autistic demand avoidance, and why it matters". There talk is the highlighted blue text.

Link to where the text is from:
thepdaspace.com/summit-2023

To me those described differences are likely to be arbitrary & subjective, possibly created from preconceived expectations of how PDA should present, i.e., as a "Profile of ASD".

I make a similar point when I critique Help4Psychology's PDA definitions to construct their "Extreme Demand Avoidance" group & their "Rational Demand Avoidance" group. To me that difference seems arbitrary & constructed from Help4Psychology's bias.

I make this point here:
researchgate.net/publication/36…

This takes me back to how differences functioning categories is often subjective or arbitrary, often constructed from people's bias/ preconceived expectations.

Its the reason why show Mild, Moderate & Severe Hyper Fawning in the below diagram showing a continuum of demand-avoidance to demand-compliance. That such categories are constructed, often by people's biases.

Takes me the second point I wanted to make.

It is terms to how "PDA Profile of ASD" is constructed, with how autistic persons without "PDA Profile of ASD" are seen as "more straightforward", seen as less impaired than those with "PDA Profile of ASD". Such as in below diagram.

https://twitter.com/Richard_Autism/status/1654601729483079685

This feeds into the narrative surrounding "PDA Profile of ASD", that its particularly impairing, requiring specific approaches, as traditional autism approaches do not.

https://twitter.com/Richard_Autism/status/1653873794929360897

There are many bold claims made about "PDA Profile of ASD" as part of attempts to justify using the term & to exclude others from it. For me claiming "PDA Profile of ASD" is a “complex presentation” (PDA Society 2022, p4) is one of many nonsensical claims!

Why do I say claiming "PDA Profile of ASD" is a “complex presentation” (PDA Society 2022, p4) is a nonsensical claim?

If one checks & considers how autistic persons as a demographic are being treated by society & the general state of autistic population. One would see generally as a demographic, we are in a great distress & suffering terribly from a lack suitable support.

I discuss some of great difficulties autistic persons are facing here:
tandfonline.com/doi/full/10.10…

I build on those points in 2019 by also pointing out how local services are often cut due to UK Government austerity policies:
researchgate.net/publication/33…

Monique Botha also details the great suffering of the autistic population due to a lack of suitable support below:
frontiersin.org/articles/10.33…

It is difficult to claim that "PDA Profile of ASD" needs different strategies to "more straightforward" autism, when typical autism strategies seem to be NOT helping most autistic persons.

It is also difficult to claim autistic persons without "PDA Profile of ASD" are NOT "complex presentations" when so many of us, are suffering terribly & the dire state of autistic populations wellbeing; because we are ALL "complex" to UK/ Western society-cultures.

If you want to know why I say much of what is said about "PDA Profile of ASD" is "bullshit", it is much of what of said about "PDA Profile of ASD" seems "bullshit" when one actually situates those claims in broader literature.

The point I am making, is that most of the bold claims about PDA, such as how it is different from autism, often vanish when one scrutinises them & contextualises them in broader literature.

That bold claims of "Persistent/ Pervasive Drive for Autonomy" often seem to be subjective &/ or arbitrary in nature, constructed from people's preconceived expectations of how PDA should present.

That if one is using "Persistant/ Pervasive Drive for Autonomy" as a name for "Pathological Demand Avoidance" (PDA) it is part of same processes, practices, beliefs which are used to cast disabled people as less than human.

That "Persistent/ Pervasive Drive for Autonomy" is as ableist as "PDA Profile of ASD".

@threadreaderapp please can you unroll again?

Thank you in advance.