WINTER IS COMING: A CHANGE IN THE PDA DISCOURSE IS IN THE AIR.

WINTER IS COMING: A CHANGE IN THE PDA DISCOURSE IS IN THE AIR.

 

I am aware that my opinions have been influential in causing unrest in some quarters of the PDA activist circles. I assure you I am doing my best to be respectful of PDA supporters’ views, I am engaging with pro PDA literature and I acknowledge the challenges faced by PDAers and PDA carers. I argue that both groups should receive the support they need. In contrast, there are other ways of providing this besides utilising the PDA level itself. Additionally, the need of PDA supporters is no more or less than the problems faced by other autistic persons and their carers’. It can be viewed that the efforts to get PDA accepted are distracting from the wider issues faced by the autistic persons and their supporters. I am deliberately respecting PDA supporters perspectives (I recognise some demand behaviours should be due to high anxiety for some cases) because I do not want to be accused of the same arguments I have made towards some academics ignoring autistic perspectives when they are critiquing the neurodiversity movement (Woods et al 2018).

 

The PDA label affects many different stakeholders, not only PDA activists and their supporters. Consequently there are varying views on what PDA is within stakeholder groups & between stakeholder groups. For instance among autistic persons I myself meet the PDA diagnostic criteria, as did Damian Milton when he was younger (Milton 2013); we have both expressed our concerns that PDA is a threat to ours and other autistic persons’ self-advocacy, which remain to be addressed in the PDA discourse. Furthermore, there is an on-going debate between clinicians if PDA exists as symptoms of autism (Green et al 2018), a distinct syndrome in either autism spectrum or attachment disorders (Flackhill et al 2017). In light of these divergent viewpoints the dominant discourse of PDA including being part of the autism spectrum and PDAers having a need for control due to high anxiety is not sustainable. Thusly, the PDA discourse needs to evolve and develop to be inclusive and representative of all stakeholders for its own epistemic & ethical integrity (Milton & Bracher 2013; Milton 2014), propagating its acceptance within wider discourses inside and external of autism.

 

It is argued that the understandings of PDA are 30 years behind autism (Christie et al 2012), this ignores the fact we are in 2018 when the UK has the most developed neurodiversity movement that  is centred on activist-academics anywhere in the globe. Pertinently, the UK is home to 50 year old disability studies and 25 year old critical autism studies disciplines (Woods et al 2018), that is sufficiently advanced to deconstruct PDA as a construction and its operation in the earliest days of PDA’s literature. I and Damian Milton are the first wave of disability studies and critical autism studies scholars investigating PDA (Milton 2013; Woods 2017). There will be others who in the future who will publish articles and empirical research projects on PDA, regardless of the PDA supporters views. Not all of this research will be critical of current concepts of PDA, much of it could be supportive of views of PDA supporters. Certain research projects ethically do not require PDA supporters consent to conduct them, my current one is such a project.

 

PDA is a proto impairment label, it is a unique opportunity for disability studies scholars to study how such a construct is created and grows over time in a longitudinal way; PDA is a precious opportunity to the discipline to have its voice incorporated into the discourse of a label that is equal with clinicians and other stakeholders. Any disability studies and critical autism studies literature over the next 2 years is likely to be key PDA literature in the future. It is possible to track the development of PDA literature over coming years to see how inclusive it is for all stakeholders views, for instance a similar effort has been started for critical autism studies (Woods et al 2018). Inclusive research will inevitably filter through into the PDA discourse, evolving it a nuanced and balanced debate away from its present ideology.

 

The views expressed in this blog post could be unpopular with some PDA activists and supporters, however I believe it is a fair assessment on the future direction of the PDA discourse. If these predictions are correct it will mean the end of prevailing stance that a wider debate on PDA is a distraction to diagnosing PDA (Christie 2007; Christie et al 2012). It is possible that major PDA stakeholders such as the National Autistic Society, PDA Society and clinicians led by Phil Christie involved in the PDA Development Group could resist such changes to the PDA discourse (PDA Society 2016; 2018). Such attempts may add credence to critical interpretations of PDA, for example it is a vehicle for the commodification of autism (Woods 2017).  I hope that all sides of the PDA debate work together to ensure there needs of PDAers and PDA carers are met, simultaneously broadening PDAs discourse for its future integrity.

 

Latest article published.

I and others have a new article published Critical Autism Studies: a more Inclusive Interpretation, which can be viewed at the link below:
https://www.tandfonline.com/doi/abs/10.1080/09687599.2018.1454380?journalCode=cdso20

 

Autism Policy and Practice Call for Papers:

The autistic-led (emancipatory) good practice journal Autism Policy and Practice has issued a call for papers available at the link below:

https://www.openaccessautism.org/index.php/app/announcement

 

References.

Christie, P., 2007. The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice. Good Autism Practice, 8 (1), 3-11.

Christie, P., et al., 2012. Understanding Pathological Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other Professionals. London: Jessica Kingsley Publishers.

Flackhill, C., et al., 2017. The Coventry Grid Interview (CGI): exploring autism and attachment difficulties. Good Autism Practice, 18 (1), 62 – 80.

Green, J., et al., 2018. Pathological Demand Avoidance: symptoms but not a syndrome. Lancet Child & Adolescent Health. DOI: https://doi.org/10.1016/S2352-4642(18)30044-0

Milton, D., 2013. ‘Natures answer to over-conformity’: deconstructing Pathological Demand Avoidance (online). Available at: http://autismexperts.blogspot.co.uk/2013/03/natures-answer-to-over-conformity.html (Accessed 11 March 2018).

Milton, D., 2014. Autistic expertise: A critical reflection on the production of knowledge in autism studies. Autism, 18 (7), 794 – 802.

Milton, D. and Bracher, M., 2013. Autistics speak but are they heard? Medical Sociology Online (online), 7 (2), 61-69. Available at: http://www.medicalsociologyonline.org/resources/Vol7Iss2/MSo_7.2_Autistics-speak-but-are-they-heard_Milton-and-Bracher.pdf (Accessed 08 April 2018).

PDA Society, 2016.  Pathological Demand Avoidance Syndrome, A Reference Booklet for Health, Education and Social Care Practitioners (online). United Kingdom: PDA Society. Available at: https://www.pdasociety.org.uk/professionals/awareness-matters-booklet (Accessed 08 April 2018).

PDA Society, 2018. PDA Development Group (online). United Kingdom: PDA Society. Available at: https://www.pdasociety.org.uk/professionals/pda-development-group (Accessed 08April 2018).

Woods, R., 2017. Pathological demand avoidance: my thoughts on looping effects and commodification of autism. Disability & Society, 34 (5), 753-758.

Woods, R., 2018. Redefining Critical Autism Studies: a more inclusive interpretation. Disability & Society. DOI: 10.1080/09687599.2018.1454380

7 Comments

  1. This is the correct reference.

    Woods, R., et al., 2018. Redefining Critical Autism Studies: a more inclusive interpretation. Disability & Society. DOI: 10.1080/09687599.2018.1454380

    I missed “et al” off the author details.

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  2. I will also note, PDAers and PDA carers can add directly to the PDA literature themselves. There contributions would need to be academic standard, along with meeting the aims & of scopes of the journals. I said this privately to a PDA supporter 7 months ago:

    “There are other means which might help your case more than writing blogs; you could try to get an academic article published where you express your personal reasons “for” PDA existing etc. The Current Issues section of Disability and Society may take it, the editor Val Williams is a wonderful assistive person. There is also Autonomy, the Critical Journal of Interdisciplinary Autism Studies and its editor Larry Arnold should assist you if you ask him for help. Good Autism Practice may take such a paper; the editors will not provide assistance with you writing it.”

    The reason why I suggested some PDA activists should learn critical thinking is that it should assist them in deconstructing counter arguments to their view and build better case for PDA themselves. Using critical thinking when writing journal articles may help get their work published.

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  3. I do not understand why you are so against PDA.
    Can you please explain?
    From what i can decipher, although you seem to believe you would meet the PDA profile you do not want to be associated with it, is this correct?
    If so, that is entirely your choice, but why then make it your mission to tear apart others?
    It seems very personal and resentful on your part, which makes me think that any research you do participate in would be flawed and biased for this reason. It is really not professional and i would argue possibly even negligent.
    Your blogs seem to be based purely on your own opinions and experiences, not taking into consideration the views and experiences of others, which is very narrow minded.
    Stating that those with PDA should adopt critical thinking, when it seems you are unable to do this yourself is ridiculous.
    The fact remaining that those with an ASC diagnosis, with a profile of PDA, and their carers need a full descriptive profile to be understood, supported adequately and ultimately accepted.
    Although PDAers have the triad of impairments they can present very differently to typical autism and the strategies for typical autism, attatchment disorder or OCD do not work! They can, indeed cause more trauma to an individual with PDA. Of course there is exceptions to the rule, with individual profiles and support within any diagnosis, due to individuality.
    Even if ASC with co-morbities lead to what is currently described as PDA. It does not change the fact that the support and self management strategies that are required are very specific and different from what is required for any other conditions.

    I look forward to your response.

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    1. Like many people diagnosed with autism I have a strong sense of right or wrong and a strong sense of justice, which is also found in PDA (Christie et al 2012). I am dissecting the PDA construct to see how much substance there is to the claims within it; the most I have so far is that some of the demand behaviours are should be due to high anxiety and that PDAers and PDA often require substantial support. Virtually everything there is significant counter argument to it. I do not have time to write a several thousand word essay that should really be submitted as an article to explain why. I have provided enough reasons why I am against the label on twitter and on the blog. General points are (not exhaustive):
      – The case for PDA is overstated.
      – The PDA case tends to be based on assumptions, autism myths, politics and reputations.
      – The empirical research currently is flawed and biased to certain ontologies of PDA and not discounting its other proposed ontologies.
      – It is a threat to the neurodiversity movement and autism self advocacy movements.
      – It reinforces current power relations over a stigmatised and oppressed population demographic.
      – The current debate is extremely one sided favouring powerful stakeholders; clinicians, disability charities and parents.
      – The debate is missing pertinent information such as the contract between Liz O’Nions and National Autistic Society in 2014 to 2016. I believe it was for the validation of the DISCO, it is the only thing that makes sense at that time. Neither NAS nor O’Nions has denied the contract.
      – There are societal factors at play driving interest in PDA, ever thought about asking sociologists about that?
      – The PDA debate has yet to be contextualised in wider discourses except the Green et al (2018).
      – All theory and constructs should be respectfully and accurately critiqued to improve it. Damian Milton’s Double Empathy Problem is a factor in Baron-Cohen revisiting Theory of Mind.
      – Not all the claims being made stack up when compared to policies/ government documents.
      – It is bad research practice and unethical for researchers to push their products when 1) the case is not there to do 2) the side effects and wider implications of their product are not known. How PDA is currently being pushed by some is uncommon practice running contrary to other academic conduct.
      – The current debate is not inclusive and representative of all stakeholders’ views.
      – PDA can be used as a tool to explore various autism discourses and other research projects.
      – I am coming at PDA from disability studies perspectives to explain PDA as a construct and it is scaring me.
      – It is people’s lives PDA affects, not only those diagnosed with it and their carers’. Also those who do not want a PDA diagnosis or agree with how the PDA debate is ongoing or propagated. The PARC event has received interest from people who are disillusioned by the current state of PDA. As Damian Milton said on twitter if we do not critique PDA we will be treating Christie and others like a god.

      Check the references of the blogs, they will hold up. I have omitted some references for articles I am writing and subsequently further points too. My opinions have survived peer review, just my academic writing was not good enough for the article to be published; there is substance to my views. I always ask myself if I am wrong; if I can justify to it myself, then I can justify it to others. I have not lost a debate on PDA in ages and that is contributing factor. I also accept and admit when I am wrong/ unreasonable/ mistaken etc.; I am human and I mistakes like everyone else does.

      Seriously what is it with PDA supporters and the assumption that PDA exists and is a form of autism? For we all know it could be a form of attachment disorder, there is limited research suggesting this. Not all people think PDA exists and many do not for valid reasons.

      Surely the negligence is on those who diagnosing something they do not know what it is, of it even exists? Responsibility is on those who are exposing the PDAers and PDA carers in the first place, diagnosing clinicians and those selling PDA. It is certainly ethically questionably to diagnose something that is not recognised and can be legally ignored by organisations and people in the UK.

      My research could be biased, but all research is. My current research is based on datasets which are publically available and so people can check them. It is striking just how apparent there is something tangible there. I do not want make money out of PDA and long term I want to go into researching the effects of the autism language, primarily on stakeholder perceptions.

      Checking the PDA discourse for its inclusivity of stakeholders’ perspectives cuts both ways. It will be apparent if clinicians ignore our work and vice versa. If anything we have to acknowledge clinicians work because it is key literature; if we do not include it will not get published (it would not even be sent for peer review).

      I hope this is a sufficient response.

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  4. I was looking for a more humane response if i am honest. I do not believe that you answered in full the personal reasons behind this apparent attack on PDA and to associate this with attatchment issues aimed at “refrigerator mothers” is beyond belief. It leads me to thinking that this is a personal experience where you blame your own mother for your traits. If so, i am so very sorry you experienced this, however, it certainly does not mean that all mother’s are inclined this way. My mother certainly was amazing and according to anyone that knows me i am one of the most natural and loving mothers they have met. Both my kids almost polar opposite but both very much nurtured and parented according to their very individual needs.

    I do not feel that you are taking into consideration those individuals and their loved ones who have found this place where they belong, the “lightbulb” moment” that just about everyone associated with PDA has, that explains everything and is a solution to the lost feeling when everything else has failed. In turn opening a door to a sense of belonging for adult PDAers and acceptance and support for children who meet this profile. The mere thought of this disappearing and others having to go through this lost stage and the trauma associated with it, simply does not need to happen, should the PDA theory be accpeted.

    You seem to discredit the fact that it lies within the Autism Spectrum and i am confused to why. As many, if not most associated with PDA have an Autism diagnosis, in which PDA is either not mentioned at all or is discussed and added as a means to signpost strategies and support.

    It is almost on par with a scenario where there is a campaign to say Autism is not a thing, that the triad of impairments leading to a diagnosis was just made up to explain a group of people with trauma, possibly caused by fathers by being absent, not connecting with their children, especially their sons, lack of role model, could it be a “refrigerator father” cause?

    Do you see how crazy this is?
    How would you feel in this situation?
    The threat that someone may be challenging not only part of you as an individual but also blaming you for your childs Autism.
    This is what you are doing here to others.

    I am not opposed to you looking into PDA and breaking it down at all… but this activist stance you have on ripping it apart at the seems with a means to discredit the only thing that seems to make sense to thousands of families is just awful.

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    1. I apologise for any distress this could have caused you.

      I have answered your question, if you do not wish to accept that it is your own prerogative.

      While I do have psychological trauma (not an insignificant amount) it is not from my parents or carers.

      You have latched on to a throw away sentence. I said PDA could be an attachment disorder as an example of what PDA could be, not that I am saying PDA is a form of attachment disorder. At no point have I ever said PDA is due to bad parenting, I ask the question is it bad parenting if you do not always follow PDA strategies as argued by Christie et al (2012) and that is another topic. Autistic persons can have trauma from many different sources, which are not from bad parenting. As an example Damian Milton has suggested it could often be from the child’s experiences at school. I am being very clear I think there are many things contributing PDA.

      I am not pretending that I know what PDA is, no-one does. There is not enough evidence to say what PDA is, or if it exists. I do accept that PDAers often have high anxiety, PDAers and their carers frequently require substantial support. I do have issues with PDA construct it. Many other people do. Just because there is a behaviour profile, it does not mean PDA exists. As Damian Milton argues PDAers experiences are explained by autism, PDAers do not need PDA to get that eureka moment. The autism label has more ubiquity that PDA does. People diagnosed with Asperger’s wanted Asperger’s theory and label to be accepted and remain in the DSM5, like the APA cared. Autism is a flawed construct and is at the whim of clinicians (which is mainly why I do not put my faith in it as a medical diagnostic label, I think the tangible stuff to autism is outside of the diagnostic criteria), PDA is unquantifiable even more so than autism. If you yourself and other PDA supporters are placing your faith in the PDA label you are putting your faith in a weak construct and at the mercy of others opinions.

      I am not familiar commodity markets. I suspect that PDA growth could be modelled as one. There seems have been bubble come along and it is bursting, which is what the PDA activists and supporters do not like. I cannot answer these questions (I could potentially get sued), but they are worth starting:
      – Have PDA supporting clinicians benefitted from growth in PDA as part of autism spectrum?
      – Have PDA supporting charities benefitted from growth in PDA as part of autism spectrum?

      What I can say is that certain clinicians are generating an income from PDA as part of autism spectrum. Certain academic careers are dependent on PDA being part of the autism spectrum. A parent support group has turned into a significant sized disability charity arguing PDA is part of the autism spectrum. An even larger disability charity is generating income from PDA and has tailored its products on the basis that PDA is part of the autism spectrum. There is plethora of products being sold on the basis of PDA being part of the autism spectrum.

      The madness is; why have not the PDA supporting academics poked holes In PDA, like I have done? I am only a master’s level student, most of the PDA supporting clinicians/ researchers should be capable of doing it and even more pertinently should be aware of them. Phil Christie for example due to his background; should be and is likely aware of most of the education and psychology based arguments against PDA. From what I can tell, they just believe they are correct and expect research results to come and in support their views. We know that PDA supporters are awaiting evidence to support knowledge from clinical settings (Christie et al 2012). The coming research from Eaton, Happe and O’Nions etc., I could put money on it having results that differentiate PDA from attachment disorder because their careers and reputations need it to. My point is that the PDA debate should more balance and open than it currently is, those supporting PDA have some responsibility for the current state of affairs.

      I am looking at public data sets to see if there is a power struggle in the PDA discourse, it is quickly apparent that there is one, an example of it is shown in this recent blog post by Chris Gillberg:
      https://gnc.gu.se/english/gillberg-s-blog/pathological-extreme-demand-avoidance–pda-eda-
      To quote it:
      “There is no established treatment method, but everyone involved (parents, siblings, grandparents, teachers, psychologists, doctors) must have a common approach and make reasonable, successively increasing demands of the child, whose dominance of those around them must be broken as early as possible.”

      PDA is not about helping the PDAers; it is about helping everyone else around the PDAers.

      I am not going to respond anymore because I think we are going to around in circles. I hope this sufficient response for you. Again I am sorry at any distress this has caused you.

      Richard.

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  5. Well i appreciate that you will not reply.

    However as a final response, i would like to state that i fully and unconditionally disagree that PDA is about helping those around PDAers. Yes to a degree it helps others understand and support PDAers. However, without it most of us would still be at crisis point, as individuals or as care givers, searching for the answers that would never come without PDA being out there. After adopting advised strategies this makes a huge difference to the life of the individual with PDA and can see a dramatic change in how they cope in this flawed society, life changing stuff. So in essence it 100% helps the PDAers to understand themselves and to adopt self regulating strategies that no other diagnosis (signpost) can achieve.

    I would kindly request that you are very careful in your picking away at this, without a clear view to the damage and trauma that would occur should you be successful in your conquest to discredit PDA.

    Autism i agree is the underlying factor, however without literature and advice of the profile of PDA within this, it has and will continue to see people suffer trauma from incorrect strategies or support.
    As for that quote… well that man is just evil and wants to break people down to conforming, now that is trauma inducing. That is on par with abuse and medical bleach enemas for Autistic people.

    If you want to associate yourself with said individuals then that is your choice. You can try and break things down and cause more harm to people, due to something you do not or are unwilling to try to understand.

    As for myself, i will continue to fight for truth and justice and be a voice for those who are vulnerable and suffering. I am fully commited to helping people to find their truth and to be accepted as they are.

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