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Neurodiversity Movement and Rational Demand Avoidance: The clash of 2 competing biopower technologies in action

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Abstract

This is a presentation I delivered at Participatory Autism Research Collective Critical Autism Studies Conference 2018. It builds on the work of Damian Milton (2013) exploring how Rational Demand Avoidance can be explained as a biopower, available at the link below: https://kar.kent.ac.uk/62694/ While reflecting on this I realised that the similar processes are also applicable to the Neurodiversity Movement. This is a slightly updated version, with more references and further proof reading. I particularly changed 2 of the Rational Demand Avoidance stereotypes to be reflective of wider literature. Please do contact me if you have questions regarding the content.
Richard Woods.
18th of July 2018.
PARC Neurodiversity and RDA 1
Neurodiversity Movement and Rational
Demand Avoidance: The clash of 2
competing biopower technologies in
action.
PARC Neurodiversity and RDA 2
My Bias.
- The presenter meets the RDA profile.
- The presenter is a RDA sceptic, significantly
more compelling research supporting RDA.
- Rational Demand Avoidance (RDA) (Milton 2017;
Woods, Forthcoming).
BIAS.
PARC Neurodiversity and RDA 3
DISCLAIMER.
Disclaimer.
- After reflection this content is different to the
submitted abstract.
-If you think you understand Foucault, you do
not understand Foucault”, Gill Loomes.
- Based on United Kingdom Neurodiversity
movement and RDA supporters.
PARC Neurodiversity and RDA 4
BIOPOWER TECHNOLOGY.
The nature of power.
- Subtle and is everywhere.
- Comes with resistance and knowledge.
- Technology used to control (Foucault 1978).
- SEND Code of Practice is an example (Burch
2018; Lehane 2017).
- Difference stakeholders can use different
technologies.
PARC Neurodiversity and RDA 5
POWER OF DIFFERENCE.
Neurodiversity.
- Autism & other impairments are natural human
differences (Arnold 2017).
- Stakeholders: Autistics persons.
- Agenda: De-pathologising of autism (Chown and
Leatherland 2018).
PARC Neurodiversity and RDA 6
POWER OF DIFFERENCE.
Neurodiversity.
- Tends to be offered for free: conferences,
journals and autism show.
- Does sell books.
- Strength in knowledge, epistemically in theory
and research.
- Critical Autism Studies.
- Weaknesses: Power differentials and tokenism.
PARC Neurodiversity and RDA 7
POWER OF DEFICITS.
Rational Demand Avoidance.
- Newson in 1980 (Gillberg 2014), modern traits
are:
- Consistent resistance to every day demands.
- Demand avoidance can use social strategies.
- Ease at role play and pretend.
- Lability of mood and impulsivity due to need
for control.
- Obsessive behaviour.
- Surface sociability that lacks social identity
/pride/ shame (Green et al 2018).
PARC Neurodiversity and RDA 8
POWER OF DEFICITS.
Rational Demand Avoidance.
- Stakeholders: Clinicians, charities and parents.
- Agenda: RDA recognised officially as part of ASD
(Christie et al 2012; Russell 2018).
- Strengths: Organisation, power differentials &
motivation.
- Weakness: Conflict of interests (Woods 2017) &
extreme position.
- Conferences, books & work training.
-Articles can be open access (O’Nions et al
2016).
PARC Neurodiversity and RDA 9
STRUCTURAL DIFFERENCES.
Neurodiversity Movement.
- No central body co-ordinating & ad-hoc.
- Participatory Autism Research Collective.
-Autonomy, the Critical Journal of
Interdisciplinary Autism Studies.
- Autscape.
- National Autistic Taskforce.
- Dependent on external help.
PARC Neurodiversity and RDA 10
STRUCTURAL DIFFERENCES.
Rational Demand Avoidance.
-Co-ordinated and organised structures.
- PDA Development Group.
- National Autistic Society.
- PDA Society.
- National PDA Campaign.
- Social Media pages.
- Are independent of external support.
- Blurred boundaries and conflict of interests.
PARC Neurodiversity and RDA 11
CLASHING TECHNOLOGIES.
Rational Avoidant ableism.
Ableism: 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).
PARC Neurodiversity and RDA 12
CLASHING TECHNOLOGIES.
Rational Avoidant ableism.
- RDA is contrasted against autism stereotypes:
- Intense emotions and dysregulation.
- Superficial Theory of Mind.
- Manipulates others.
- Need for control.
- Roleplay and fantasy.
- Dislikes routines.
- Likes novelty.
- Makes eye contact(Christie 2007; Newson et al
2003).
- Female form of autism (Gould and Ashton-
Smith 2011).
PARC Neurodiversity and RDA 13
CLASHING TECHNOLOGIES.
Why not try self-stigma?
- Self-stigma: Awareness, agreeing and
application.
- Self-esteem and self-efficacy.
- Avoiding evidence based practices.
- Can be countered with positive group identity
(Corrigan et al 2009).
PARC Neurodiversity and RDA 14
CLASHING TECHNOLOGIES.
Why not try self-stigma?
-RDAs pathologising discourse.
- Low self-esteem 73% (Russell 2018).
- PDA by PDAers (Cat 2018).
- Applicable to RDA carers.
PARC Neurodiversity and RDA 15
CLASHING TECHNOLOGIES.
Internalised Ableism.
- Complaints.
- Name calling.
- Secret documents.
-Sally Cat’s recent petition.
PARC Neurodiversity and RDA 16
CLASHING TECHNOLOGIES.
Internalised Ableism.
- Power is knowledge (Flyvbjerg 2001).
- Keeps autistic persons divided.
- Mercy of disability of charities (Oliver 2013).
- Diverting research interest from community
wishes (Woods 2017).
PARC Neurodiversity and RDA 17
ASSIMILATION.
Whose Neurodiversity?
- RDA supporters using neurodiversity.
- Is it the same as ours?
- Neurodiversity appropriation?
- If so, does this matter?
PARC Neurodiversity and RDA 18
COPY CATS?
Areas of cross-pollination.
- Rational Demand Avoidance and de-
pathologising language.
- Pedagogy research using RDA strategies (Woods,
Forthcoming).
- Autistic demand avoidance behaviour research
(Woods 2018).
- Development of RDA theory using autistic
theory (Milton 2018).
- Full support for all autistic persons.
- Ethical debate is crucial for this.
PARC Neurodiversity and RDA 19
COPY CATS?
Neurodiversity Mobilisation.
- RDA advocates are organised and effective.
- Neurodiversity movement could copy this
model.
- Would take collective decision.
- Avoid conflict of interests.
PARC Neurodiversity and RDA 20
The End Game.
- Contact Details:
richardwoodsautism@gmail.com
- Twitter handle:
- @Richard_Autism
- My blog, Rational Demand Avoidance:
https://rationaldemandavoidance.com/
- Any questions?
ANY QUESTIONS.
PARC Neurodiversity and RDA 21
References.
-Arnold, L. (2017). A brief history of “Neurodiversity” as a concept and perhaps a
movement. Autonomy, the Critical Journal of Interdisciplinary Autism Studies,
1(5).
- Burch, L. (2018). Governmentality of adulthood: a critical discourse analysis of the
2014 Special Educational Needs and Disability Code of Practice. Disability and
Society, 33(1), 94-114.
- Campbell, F. (2008). Exploring Internalized Ableism Using Critical Race Theory.
Disability and Society, 23(2), 151162.
- Cat, S. (2018). PDA by PDAers, from anxiety to avoidance and masking to
meltdowns. London: Jessica Kingsley Publishers.
- Chown, N. and Leatherland, J. (2018). An Open Letter to Professor David Mandell
Editor-in-Chief, Autism in response to the article “A new era for autism research,
and for our journal”. Autonomy, the Critical Journal of Interdisciplinary Autism
Studies, 1(5).
- 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), 311.
JOB REFERENCES.
PARC Neurodiversity and RDA 22
References.
- Christie, P., Duncan, M., Fidler, R. & Healey, Z. (2012). Understanding Pathological
Demand Avoidance Syndrome in Children: A Guide for Parents, Teachers and Other
Professionals. London: Jessica Kingsley Publishers.
- Corrigan, P., Larson, J., & Rüsch, N. (2009). Self-stigma and the “why try” effect:
impact on life goals and evidence-based practices. World Psychiatry, 8(2), 75-81.
- Flyvbjerg, B. (2001). Making Social Science Matter: Why Social Inquiry Fails and
How it Can Succeed Again. Cambridge, UK: Cambridge University Press.
- Foucault, M. (1978). The History of Sexuality, Volume 1: An introduction. New
York: Random House.
- Gillberg, C. (2014). Commentary: PDA public display of affection or pathological
demand avoidance? reflections on O’Nions et al. (2014). Journal of Child
Psychology and Psychiatry, 55(7), 769770.
- Gould, J, and Ashton-Smith, J. (2011). Missed diagnosis or misdiagnosis? Girls and
women on the autism spectrum. Good Autism Practice, 12(1), 34-41.
- Green, J., Absoud, M., Grahame, V., Malik, O., Simonoff, E., Le Couteur, A., &
Baird, G. (2018a). Pathological Demand Avoidance: symptoms but not a syndrome.
Lancet Child & Adolescent Health, 2(6), 455464.
JOB REFERENCES.
PARC Neurodiversity and RDA 23
References.
- Lehane, T. (2017). “SEN’s completely different now”: critical discourse analysis of
three “Codes of Practice for Special Educational Needs” (1994; 2001; 2015).
Educational Review, 69(1), 5167.
- Milton, D. (2017). Educational discourse and the autistic student: a study using Q-
sort methodology. In Milton, D. (Ed.), A Mismatch of Salience: Explorations of the
nature of autism from theory to practice (pp 163-179). Hove, UK: Pavilion
Publishing and Media Limited.
- Milton, D. (2018). Pathological Demand Avoidance (PDA) and alternative
explanations: a critical overview (Conference Paper). Retrieved from:
https://kar.kent.ac.uk/67064/1/PDA%20and%20alternative%20explanations.pdf
(Accessed 07 November 2018).
- Newson, E., Le Maréchal, K., & David, C. (2003). Pathological demand avoidance
syndrome: a necessary distinction within the pervasive developmental disorders.
Archives of Disease in Childhood, 88(7), 595600.
- Oliver, M. (2013). The social model of disability: thirty years on. Disability &
Society, 28(7), 1024-1026.
JOB REFERENCES.
PARC Neurodiversity and RDA 24
References.
-O’Nions, E., Gould, J., Christie, P., Gillberg, C., Viding, E., & Happé, F. (2016).
Identifying features of ‘pathological demand avoidance’ using the Diagnostic
Interview for Social and Communication Disorders (DISCO). European Child &
Adolescent Psychiatry, 25(4), 407419.
- Russell, S. (2018). Being Misunderstood: Experiences of the Pathological Demand
Avoidance Profile of ASD (Online report). Retrieved from:
https://www.pdasociety.org.uk/resources/research-summary/2018-survey
(Accessed 16 November 2018).
- Woods, R. (2017). Pathological demand avoidance: my thoughts on looping effects
and commodification of autism. Disability & Society, 34(5), 753758.
- Woods, R. (2018). Rational (Pathological) Demand Avoidance: what it is not, what
it could be & what it does (Conference Paper). Retrieved from:
https://www.researchgate.net/publication/325181432_Demand_Avoidance_what_it
_is_not_what_it_could_be_what_it_does (Accessed 07 November 2018).
- Woods, R. (Forthcoming). Pathological Demand Avoidance: Is It Time to Move
beyond the Pathological Need to Not to Develop More Inclusive Pedagogical
Practices? Autonomy, the Critical Journal of Interdisciplinary Autism Studies.
JOB REFERENCES.
... 1) This builds on a previous talk at delivered in the 2018 PARC conference (Woods 2018 ...
Conference Paper
Full-text available
Presently in the United Kingdom (UK), the proposed Disorder, Demand-Avoidance Phenomena (DAP, sometimes called “Pathological”/ “Extreme” Demand Avoidance), is a “culture-bound concept”. DAP is mainly characterised as a high anxiety causing a person to display frequent avoidance of “ordinary” (non-autistic) demands, with the dominant outlook being it is a “Profile of ASD”. Despite this there has been little consideration within the literature for if “DAP Profile of ASD” should be a “culture-bound concept” in the UK? This conference talk breaks down various factors, including actions of prominent “DAP Profile of ASD” proponents to explain how DAP has become a “culture-bound concept” in the UK. Contextualising many different debates which are generally ignored by its proponents, and typical research and practice standards which suggest that DAP should never have been allowed to form a “culture-bound concept”. Additionally, I detail how DAP is used to control various autism stakeholders. I conclude with ways to move forward, by adopting a scientific method-based approach to research & practice for DAP, thus adhering typical research & practice standards. It was an online event held over Zoom. I have added to the material presented yesterday, to add relevant, or necessary information. One can access a recording of the talk through this link below: https://www.youtube.com/watch?v=Ulc3eIG3og8
ResearchGate has not been able to resolve any references for this publication.