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:
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:
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