Sorry to tell you, but PDA ISN’T stealing your Autistic voice!

A while ago I wrote the post We should be standing together. Today I read an article which shows just how far removed from standing together some people are. Here is the link if you want to read the article.

The author of the article (pathological demand avoidance: my thoughts on looping effects and commodification of autism) expresses how he feels PDA is a label given to Autistic’s in order to silence their voices. Yep, you read that right, he thinks PDA silences the voices of Autistics.

Aside from the basic fact that PDA is Autism, therefore how a label of PDA can silence itself is baffling. It’s a bit like saying that labelling a dog as a dalmatian means it no longer represents dogs.

The author starts by explaining how Autism is a type of human and that PDA is a label created by ‘the autism industry‘ and is better described by other labels such as ODD (we all know how that argument goes). He says that PDA is not in the manuals because other labels better describe the behaviours (not true, just look at how long it took autism to be correctly added into the manuels).

He goes on to say that the reason PDA is given as a label is because there are Autistics who have developed moderate social skills and are advocating for themselves. The ‘organisation‘ (whoever that is) then gives these Autistic’s a PDA label because the ‘organisation‘ doesn’t accept their self-advocating. This is quite literally the first time I have ever heard of such a thing happening. Firstly, it is incredibly difficult to get a PDA diagnosis, those that do as adults have usually advocated for that PDA label because they think PDA fits them best. Secondly, how on Earth would giving someone a label that basically says they cannot help their behaviour ensure they are unable to advocate for themselves? Surely that would make them more able to advocate for themselves, especially since they now have the label they need to self-advocate correctly. By advocating for PDA a person is also advocating for Autism, because PDA is Autism!

The author then states that ‘looping‘ is how humans evolve over time by adapting to the labels given to them (this fits to a degree, for example a person being told they are stupid will come to believe they are stupid and may act so to a degree), however, stating that an adult Autistic when given a PDA label then starts to show PDA behaviour simply because they are trying to ‘fit into the label‘ is rather condescending. While it’s true that many PDAers may show ‘more’ demand avoidance behaviour after gaining knowledge of PDA and/or a PDA label, this doesn’t mean they are changing their behavior to ‘fit’ the label but rather that they are lowering their expectations of themselves to match their actual capabilities. PDAers often are too hard on themselves because they are constantly comparing themselves to others and feeling they are lacking, by allowing themselves to lower their expectations to match their abilities they are better serving their own mental health needs. This may appear to outsiders like they are changing their behaviour to match their label but actually they are changing their behaviour to match their abilities, instead of continuing to live at a level far beyond their capabilities. By insinuating that someone given a PDA label is changing their behaviour to match the label and that the label is incorrect, is to insinuate that the person is lying about their capabilities and disabilities and therefore are undermining the person’s very real struggles.

The author explains that the ‘autism industry‘ believes that Autistics are basically incapable of self-advocating and therefore whenever any Autistic self-advocates they are labelled as PDA because their behaviour is seen as ‘demand behaviours‘ and as ‘resisting predominant neurotype societal expectations’. The author goes on to state that the ‘autism industry‘ misunderstanding what constitutes Autism and the Autistics self-advocating creates a ‘mismatch between autistic self-advocates and professionals‘ which leads them to label Autistics as PDA thus giving them ‘carte blanche to ignore autistic self-advocates‘. Basically, the writer believes that professionals label Autistics as PDA in order to ignore what they say.

The author then goes further in insulting PDAers by saying that the ‘autism industry‘ is using PDA to divide self-advocating Autistics from non-self-advocating Autistics by removing the threat (self-advocating Autistics). How a PDA label removes Autistics from Autism culture I don’t know but I’m sure the writer has some backing for this idea?

The author then says that the ‘autism industry‘ are using PDA as a tool to make money by charging for things such as PDA conferences. Did you realise you are being conned into paying for help that doesn’t work? No? Me neither! If you’re angry then you have every right to be. 

Apparently (according to the author’s opinion) PDA also ‘creates and reinforces cultural barriers’. Saying that PDA creates and reinforces cultural barriers shows the author doesn’t know or believe that PDA is a type of Autism. It’s a bit like saying one dialect in a language creates barriers to culture, no, ignoring different dialects creates barriers, if you accept all the variations in a culture then barriers breakdown. By the author’s complete disregard for PDA as a valid diagnosis and a type of Autism he himself is creating a cultural barrier.

Next he says using PDA as a label is ‘resisting efforts to move away from the medical paradigm towards social model paradigms‘. For those who don’t know, the medical model states that diagnosis are disabilities and that the disabilities need to be fixed. The social model states that people are disabled only by the limitations of society and that disabilities are to be accepted and not changed. Now, this in itself it a contentious subject. While some Autistics believe society is the disability for Autistics, others believe that Autism itself is the disability. Most fall somewhere in between. The author is saying that PDA is changing Autistic thinking so they are more inclined towards the medical model rather than the social. This may be true to a small degree, howeverit is foolhardy to say that PDA is 100% a disability due to society. The very fact that PDA means PDAers are unable to do the things they want to do no matter how hard they try shows that it is a disability, the person themselves, no matter what society they are in, are unable to meet their own wants and needs. This is what being disabled means. And while there are many Autistics who feel only disabled by society, this only serves to highlight the differences between PDA and Autism. Perhaps there are some Autistics who fully believed in the social model until they learnt about their own PDA (I was one of these people), it doesn’t mean they have been forced into adopting a model that doesn’t hold true, nor does it change their struggles, it just means they are now aware of the cause of their difficulties. PDAers are very much disabled by society just as much as Autistics are, but that doesn’t mean that they are fully disabled by society, nor does it mean they are fully in the medical model of disability either. There can be a middle ground here, and this is what the author fails to see.

In this way, PDA crafts disabling social barriers, removing the opportunity for autism self-advocacy and autism self-regulation, turning an impairment human kind into a disability’. PDA does no such thing. Having a PDA label (whether accurate or not) does NOT prevent a person from self-advocating. The only disabling social barrier created by having a PDA label is that of ignorant people who misunderstand what PDA is and fails to create social connections between those PDAers. Just like with Autism. The social connections between non-PDA Autistics and PDAers are as strong as both parties wish them to be. I myself have tried to make many social connections between all neurodiversities, for someone with no understanding of PDA to come along and say that my being PDA is creating social barriers is insulting to my advocacy work and has the very real potential to undo not just what I have worked towards but what other PDAers and Autistics like me have worked towards for years. Having a PDA label does not create disability, ignoring PDA and advocating against the use of PDA labels due to ignorance does.

With the need for kinds to be categorised and researched, PDA is diverting resources away from the limited UK research into autism‘. Again, PDA is Autism. There is no diverting of resources. There might be a sharing of resources but not a diverting. There are so few resources available for PDA overall, most of the resources available have come from families of PDAers and PDAers themselves. It sounds like the author is saying that those people should be focusing on Autism instead. Again, PDA is Autism, by creating and working on resources for PDA they are creating and working on resources for Autism.

At the same time, PDA is not helping to fulfil wishes of people on the autism spectrum‘. Do I need to continually repeat myself? Fulfilling the wishes of PDAers is fulfilling the wishes of Autistic people.

PDA is a spurious diagnosis for females‘. Another new one on me! I’m pretty sure I recall Newson’s reports to say that PDA was an almost 50:50 split between male and female. If there are many more females being labelled with PDA than Autism then it is because the Autism criteria is flawed and not because people are using PDA as a female version of Autism.

New people will self-classify on the autism human kind, identifying with PDA.’ Because they are PDA.

These individuals’ memories will change to align with the descriptions of PDA.’ Funnily enough I have been meaning to write a blog post on this subject. For now I will shorten it. Memories are changeable, for all humans, they are like tendrils that move and fade over time. Most people don’t fully remember events exactly as it happened and the further back the event was then the greater chance that the memory has warped. This in no way means that Autistics are altering their memories to fit the PDA label, rather they are discovering links that they hadn’t before realised were there. Otherwise, wouldn’t every Autistic believe they have PDA?

They will now adapt their behaviours, acts and temperament to reflect those expected of PDA.‘ If Autistic behaviour is so easily changed that a simple labelling can alter it, then it begs the question why are all the Autistics that are diagnosed late in life not neurotypical? If people can change their behaviour so easily to fit in that they fully become that label then why, when so many were labelled as NT, were they not showing fully NT behaviour. Better yet, how do we know then that Autistics are not just NT’s adapting their behaviour to fit into the Autism label?

PDA as a category attributes actions, behaviour and temperament onto the individual and away from the organisations and how organisations treat such individuals.‘ No! Because one of the first things parents of PDAers learn when discovering PDA is that they have to change their behaviour and demands in order to help the PDAer manage their own behaviour. Parents of PDAers are fully aware of how ‘organisations’ treat PDA people and how their actions impact (often negatively) the PDA person. This is why so many reduce given demands, it is why so many home school, it is why PDA parenting exists.

These all contribute to control the evolution of the autism human kind’. What he means is they contribute to how Autism is defined by labels. I think we’ve already established that labels cannot directly change the neurological makeup of a person.

The autism industry would have successfully divided the autism human kind to form a new PDA human kind‘ There already is a PDA human kind, the obvious genetic evidence of PDA is evidence of this. PDA has been around for far longer than the label has. This isn’t a chicken and egg debate, the label obviously came last.

Apparently, by reinforcing the use of PDA as a label we are allowing NT’s to ignore the voices of Autistics. Um, nope! NT’s are ignoring the voices of Autistics because they are ignorant of Autism or they just don’t care. PDAers add to the Autism voices, not take from them. PDA is so far back from where Autism is that PDA is still only calling for awareness of PDA while Autism long ago moved onto awareness.

He goes on to say that Autism organisations such as NAS gain ‘significant‘ amounts of money from PDA. Apparently £90 to £474 is significant. I notice he didn’t include the figures for Autism costs. And apparently PDA diagnosis are the only diagnosis that they use the DISCO for, um, so what are they using to diagnose Autism then?

The autism industry is using PDA to maintain the dominance of autism human kind over other impairment labels‘ I thought he was arguing for the social model? other impairment labels?‘ I’d also be interested in hearing how this is happening since very few professionals have even heard of PDA and most refuse to accept and diagnose it.

He states that people wanting a PDA diagnosis are buying into an empty promise of services, he leaves out the fact that Autism doesn’t guarantee any services either.

He ends the article by saying how people can get back control over Autism evolution by refusing to accept PDA and by distancing themselves from it. He states that by ignoring PDA diagnosis people can ‘escape concrete impairment identities’ and warns that PDA isn’t a recognised diagnosis.

At the end of the article it says ‘No potential conflict of interest was reported by the author.’ Well I can think of some. How about pushing your own agenda onto people, how about discrediting PDAers, overriding the voices of Actual Autistics by pretending you speak for all of them (including PDA Autistics), how about insulting PDAers and Elizabeth Newson.

I’ll end with this thought. The person who wrote this article does not in any way speak for all Autistics, he does in no way speak for PDA even if you only think of PDA as a label, he does not have any understanding of what PDA is (as shown through his article) and should not be allowed to write about PDA (sadly this won’t be monitored). I would advise not to believe any of this person’s opinion, because that is exactly what it is, his opinion!

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9 thoughts on “Sorry to tell you, but PDA ISN’T stealing your Autistic voice!”

      1. Good for you. xx It’s scary how writers can basically put out what they want no matter how inaccurate it is. Good for us that we have them outnumbered so hopefully the rubbish they have written won’t do too much harm. Quite right to stand up to it though. x

  1. Personally, I feel that when you realise there’s a legitimate cause behind behaving less neurotypically, you’re anxiety towards how others perceive you actions lessens to a degree so you feel more free to act as you normally would, rather than hide your PDA tendencies.

  2. I think PDA has contributed to autistic voices being understood and respected.

    Newsom herself was very respectful.

    Fujoshipeanut: yes about feeling free and that lessening anxiety. I wish that for everyone.

    Lovepda: yes, writers do put out what they want. And I remember when we didn’t outnumber – we were outnumbered. Inaccuracy does this harm.

  3. Oh, come on. Does everyone who feels unaccepted by society need a frigging label/diagnosis? I have few friends, don’t really fit in, and feel like I need to be in control of everything. However, a diagnosis or syndrome will not change me or h3l.p. me. Sorry, but suck it up and deal with the worlds as it is.

    1. Like they say, if the shoe fits. Ive been ‘sucking it up’ most of my life and all that led to was depression and suicidal thoughts. If i need a label or diagnosis to be happy and fit in then so be it, my life, my choice.

  4. Aside from the basic fact that so-called PDA is ^not^ autism, but rather an umbrella term for mixed disorder of conduct and emotions and generalized anxiety disorder of childhood. Google ‘grnbook.pdf’ and look them up in that if you don’t believe me. And let’s not forget the fact that therapies specific to the autistic spectrum don’t help those with PDA, which they would if it was actually autism. Therefore, attempting to shoehorn PDA into the autistic spectrum underserves both groups, especially those with the more recently identified condition.

    1. I disagree, PDA most definitely is autism. It’s often misdiagnosed as a multitude of conduct disorders, emotion disorders and GAD, but none of those explain the real struggles underneth the surface behaviour so called professionals are seeing and badly labelling. Using 3-6 various labels that sort of explain behaviour rather than one label which ‘fits to a T’ is rather pointless, especially when the support and accomodations for the multitude of labels does little to actually help the individual, whereas PDA strategies very much help.
      I’m not sure which autism specific therapies you mean, I’m unaware of any specific therapies that actually help the autistic individual. I do hope you’re not talking about ABA and other similar problematic therapies that appear to work as far as NT’s can see, but are actually extremely unhelpful and very harmful to autistic individuals.
      ‘Therapies’ that do help autistics also help PDAers, these are accommodating the individual’s needs, being respectful, respecting autonomy ect.
      No one is attempting to shoehorn PDA into the spectrum, we are merely describing what already exists and attempting to have it recognised so society can understand, respect and accomodate PDAers. This doesn’t underserve either diagnosis, it’s important that people recognise the autistic traits in PDAers (especially when our difficulties are masked behind our need to avoid) and that the PDA traits are recognised in PDA autistics. I know many autistics who had no idea they were PDAers and were still struggling despite having an autism diagnosis. It’s extremely important that people are aware of where they struggle, why and how they might be able to help themselves. If people refuse to accept that PDA is autism then many PDAers who identify as autistic might continue to struggle needlessly. I don’t understand why so many non-PDA autistics are against this, but I would urge them to at least respect our experiences, even if they don’t make sense. There’s enough gaslighting, ableism, segregation and alienation in the autism community, I’d have thought autistics themselves would be against adding to it.

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