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PARC RDA/ PDA 15 May 2018. 1
Richard Woods.
15th of May 2018.
Rational (Pathological) Demand
Avoidance: What it is not, what it could
be and what it does.
PARC RDA/ PDA 15 May 2018. 2
I am pro neurodiversity and the social model (Woods 2017b). However
I do also support the medical model, I do have issues with its
language and its effects which I will discuss later.
MY BIAS AND PERSPECTIVES.
I am a PGCert Autism and Asperger’s Syndrome Student at Sheffield
Hallam University.
Diagnosed autistic 6 years ago at the CLASS clinic,
I will be engaging RDA from using this Critical Autism Studies
Definition:
“The ‘criticality’ comes from investigating power dynamics that
operate in discourses around autism, questioning deficit-based
definitions of autism, and being willing to consider the ways in
which biology and culture intersect to produce ‘disability’” (Waltz
2014).
I may make generalisations, this is not what I mean. I think the
processes driving RDA are many interactions and intersections; being
variable with each person.
PARC RDA/ PDA 15 May 2018. 3
DISCLAIMER & SUPPORT MATERIAL.
Disclaimer.
- I have updated the power point since the talk.
- This has been by proof reading.
- Adding references and providing a full reference list.
- I have slightly expanded some points to cover relevant material
and to act on feedback from the talk.
- I did not have time to go into as much depth as I would like to on
all topics present, some of the points can be further developed.
Supplementary Material.
- This presentation builds on a previous essay, which can be accessed on my
blog and can be found via this link:
https://rationaldemandavoidance.com/2018/05/15/critical-reflections-on-
the-pathological-demand-avoidance-debate-a-response-to-the-practice-mk-
blog-and-discussion/
PARC RDA/ PDA 15 May 2018. 4
FOOD FOR THOUGHT.
The list of 10 traits:
- Have a unique talent e.g. role play.
- Preference for stability in e.g. best friend or routines.
- Sensory sensitivities e.g. cannot wear certain clothes or finds
certain sounds painful.
- Likes to have friends.
- Perfectionism e.g. will not stop until their work is perfect.
- Avoidance of eye contact.
- Has high anxiety.
- Restricted range of interests.
- Social awkwardness.
- Had language delay e.g. only spoke after 4 years old.
- Is clumsy.
Throughout the talk there will be regularly displayed a list of traits,
for reflection, are they associated with RDA or autism?
PARC RDA/ PDA 15 May 2018. 5
DISABILITY HISTORY.
Key Dates.
- Middle Ages –1800s: Disabled people seen as being possessed by
demons
- Industrial Revolution: Disabled people are excluded from work
force
- Post WW2: People should be helped by fixing them.
- 1950s onwards: Dominance of Medical Model.
- 1978: Warnock Report creates inclusive education in UK.
- 1981: Mike Oliver coins Social Model in a social worker training.
- 1983: DPI definition of Impairment and Disability.
- 1989: UN Conventions of Rights of a Child.
- 1995: Disability Discrimination Act.
- 2006: UN Convention of Disabled Peoples.
- 2010: Current Equality Act 2010.
PARC RDA/ PDA 15 May 2018. 6
DISABILITY STUDY CONCEPTS 101.
The Social Model.
Impairment: Is the functional limitation within the individual caused
by physical, mental or sensory impairment.
Disability: is the loss or limitation of opportunities to take part in the
normal life of the community on equal level with others due to
physical and social barriers (Goodley 2011).
Positives: It places emphasis on adapting environment for the needs
of persons. Provides a focal point for Disability Rights Campaigners.
Can be used with other interventions.
Negatives: It is a model, only describes disability and does not explain
personal experiences. Can be a blunt tool, other people can become
disabled (this can be a positive). Has been re-appropriated away from
original interpretations (Barnes 2003; Oliver 2013).
PARC RDA/ PDA 15 May 2018. 7
DISABILITY STUDY CONCEPTS 101.
Biological, Psychological & Social.
Impairment Effects: bodily activity and behaviour that are directly
attributable to bodily variations designated “impairments” (Thomas
1999).
Disablism: focuses on the negative treatment towards disabled people
and social policy (Goodley 2011).
Psycho-Emotional Disablism: The social imposition of
restrictions of activity on people with impairments and the socially
engendered undermining of their psycho-emotional well-being (Reeve
2014; Thomas 1999).
Critique.
It is suggested that combining impairment effects and psycho-
emotional disablism to the social model, it can resemble and function
like biopsychosocial model.
PARC RDA/ PDA 15 May 2018. 8
SEND EDUCATION HISTORY.
Key Dates.
-1944 Education Act 1944.
-1978 Warnock Report.
-1981 Education Act 1981.
-1997 Excellence for all children: Meeting Special Educational
Needs.
-2001 SEN & Disability Act 2001.
-2001 SEN Code of Practice.
-2004 Removing Barriers to Achievement: The Government’s
Strategy for SEN
-2006 Disability and Equal Duty Act.
-2009 The Lamb Inquiry: Special Educational Needs and Parental
Confidence.
-2011 Support and Aspiration: A new approach to SEN and Disability.
-2014 Children & Families Act 2014.
-2015 SEN & Disability Code of Practice.
- (Goodley 2011; Hodkinson 2010; Runswick-Cole 2011; Woods
2017b).
PARC RDA/ PDA 15 May 2018. 9
EDUCATION DEFINITIONS.
Key words.
SEND: Special Educational Needs and Disabilities; this covers
everything from autistic pupils to children in care, any pupil who is
disadvantaged.
Segregation: When SEND pupils are educated in special schools.
Integration: When SEND pupils are placed into mainstream schools
and are expected to adapt themselves to the environment.
Inclusive Education: When SEND pupils are placed into mainstream
schools and the schools adapt to SEND pupils needs.
(Pellicano et al 2018; Rodriguez and Garro-Gill 2015).
Critique.
There is significant debate between of Special ed vs Inclusive ed,
possibly as UNESCO has not defined Inclusion (Reindal 2016). Inclusion
is seen as constant a journey, not a goal in itself (Haug 2017).
PARC RDA/ PDA 15 May 2018. 10
UK EDUCATION SYSTEM.
Current set up and operation.
- It is needs based, supposedly.
- Significant support is provided through EHCPs, via wrap around
support by working with all stakeholders.
- Neoliberal market ideology is rampant, focusing on short term
attainment.
- Under significant strain through austerity, applying cuts to Local
Authority budgets and school budgets.
- Large numbers of academies that are independent of Local
Authorities, academies are responsible for their own admissions.
-Argued focus on attainment is detrimental to inclusion; “super
heads” likely to exclude under achieving pupils to raise results.
- Leads to huge variation in support for pupils across the country, in
particular SEND pupils most at risk of the system failing them.
- Growing numbers of EHCPs are being refused.
- (APPGA 2017; Boesley & Crane 2018; Burch 2018; Hill et al 2016;
Hodkinson 2010; Leatherland 2014; Lehane 2017).
PARC RDA/ PDA 15 May 2018. 11
DISABLED PERSONS IN THE UK.
Current Situation.
- Disability effects 13 million people in the UK; 1:5 people.
- 1,228,785 pupils in the UK have SEND label, that’s 11.6% of pupil
population.
- Having an SEND label 5 times more likely to be excluded and have
less 5 good GCSEs (Equality and Human Rights Commission 2017).
- Disabled persons are most likely to be victims of austerity. It is
argued that the government is discriminating against disabled
persons (Committee on the Rights of Persons with Disabilities
2017).
Why is this so?
- Neoliberalism dominates UK culture and society, where each
person is meant to be an independent self-regulating individual.
- In order to achieve this, UK disability support is centred on the
concept of the mythical norm (Burch 2018; Goodley 2011; Lehane
2017).
PARC RDA/ PDA 15 May 2018. 12
UNICRON; THE MYTHICAL NORM.
The Mythical Norm.
- 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.
- Since the 1950s the medical model of disability has been dominant
in the UK.
- The medical model seeks to repair people if they are damaged.
- Tends to be easy for physical injuries.
- For invisible impairments this is a significant challenge, how to
know what is faulty and how is best to be fixed?
- Psy-professions tend to use behavioural based tests to view if a
person is psychologically damaged, so they can apply
interventions.
- These behaviour tests often measure behaviours against the
normal (Goodley 2011).
- What is normal?
PARC RDA/ PDA 15 May 2018. 13
UNICRON; THE MYTHICAL NORM.
The bell shape shows collection of different values for a
characteristic, e.g. intelligence (Goodley 2011, is source of graph).
A Gaussian Curve.
PARC RDA/ PDA 15 May 2018. 14
THE MEAN NORMAL.
Normal replaces average. Bottom end becomes disability to be cured.
Top end becomes celebrated “hypernormal” (Goodley 2011, is source
of graph).
PARC RDA/ PDA 15 May 2018. 15
THE MEAN NORMAL.
Normal and Its implications.
Normal: Using statistical averages to describe the ideal person. It is
impossible for a person to meet the statistical averages, because
individuals have uneven profiles. “Normal” is a myth, meaning it does
not exist.
- With normal being a myth, powerful stakeholders can arbitrarily
define what traits are a deficit to be fixed and which traits are
acceptable.
-In 1973 the American Psychology Association ‘cured’ thousands of
people of Borderline Mental Retardation due to changing how IQ
scores are used (Goodley 2011).
PARC RDA/ PDA 15 May 2018. 16
MEDICAL MODEL DEFICITS.
How do autism and normal fit together?
- Autistic people have spikey skills profiles (Milton 2017; Wilkinson
2016).
- Autism labels that we display can vary over time (Lawson 2010).
- Nothing is unique or universal to autism, what is found in autism
can be found outside of autism.
- Autism + Environment = Outcome (Beardon 2017).
- Where a person thinks autism starts and stops is based on their
bias (Milton 2013; 2017) and culture.
- This can be seen in the difference in UK and USA prevalence rates:
1.1% (Brugha et al 2012) vs 1.68% (Balo et al 2018).
What does it mean for autism and the mythical norm?
- We do not know where autism starts or stops; its boundaries are
dynamic, mobile and diffuse; dependent on the situation of the
autistic person & their observers bias.
- Autistic persons are a demographic of extremes and may not follow
Gaussian statistics.
PARC RDA/ PDA 15 May 2018. 17
FOOD FOR THOUGHT.
What does this profile fluidity mean for RDA?
With autism having unstable foundations, what might that mean for
RDA considering RDA is viewed against autism?
The list of 10 traits:
- Have a unique talent e.g. role play.
- Preference for stability in e.g. best friend or routines.
- Sensory sensitivities e.g. cannot wear certain clothes or finds
certain sounds painful.
- Likes to have friends.
- Perfectionism e.g. will not stop until their work is perfect.
- Avoidance of eye contact.
- Has high anxiety.
- Restricted range of interests.
- Social awkwardness.
- Had language delay e.g. only spoke after 4 years old.
- Is clumsy.
PARC RDA/ PDA 15 May 2018. 18
MEDICAL MODEL DEFICITS.
How does the medical model affect autistic persons.
- Autism is legally seen as a mental disorder (Mucalhy 2016).
- Autistic people can be sent to forensic hospitals for life (Moxon
2016).
- Most UK research spending is biology based (Pellicano et al 2014).
- Stigma, leads to mental health issues (Humphrey & Lewis 2008).
- Stigma contributing to negative perceptions of autistic persons
(Nicole et al 2015).
- 80% of autistic persons experience depression and anxiety (Lemmi
et al 2017).
- Suicide and attempted suicide rates at 9 times higher than non-
autistic persons (Hirvikoski et al 2016; Moses 2017).
- Mercy killings by autism parents (McGuire 2016; Waltz 2008).
- Employment rates are only 32% (National Autistic Society 2016).
- In Western countries there are problems with mainstreaming
autistic pupils (Pellicano et al 2018). Particularly mentioned by
teachers (Kiloran et al 2014; Lindsay et al 2013).
Not all autistic problems are due to medical model, but it is a factor.
PARC RDA/ PDA 15 May 2018. 19
RDA AS A SYMPTOM.
RDA and Education System?
- With budget cuts to schools and Local Authorities and fracturing of
support, it is harder for children with social, emotional and mental
health needs (includes autism) to gain an EHCP (Boesley and Crane
2018).
- Subsequently these pupils are most likely to be excluded in current
times. These labels have behaviour overlap with RDA and are being
seen in recent samples (Brede et al 2017; O’Nions et al 2017).
- This increases pressure on parents to access support for their
child. When added to psychological demands of being a RDA carer,
psycho-emotional disablism is a possibility.
- Likely same for the child, which is suggested by Brede et al (2017).
-This creates extra demand for support and a pupil’s needs can be
measured by how many labels they have. Various stakeholders turn
to a label that could assist a child gain support they should already
be receiving; in this case RDA.
-This creates a ‘rat-race’, where it is parent vs parent scrambling
to acquire labels to ensure their child’s needs are met.
PARC RDA/ PDA 15 May 2018. 20
RDA & DISABILITY STUDIES.
RDA defined by impairment and impairment effects.
RDA Impairment traits: High Anxiety.
RDA Impairment Effects traits: The “demand avoidance behaviour”,
lability of mood and impulse control.
Why these?
- The core trait is high anxiety levels.
- The demand avoidance behaviour is how a RDAer attempts to
regulate and adapt to the high anxiety.
- The high anxiety levels and demand avoidance behaviours can be
seen as an interactive process, with being labelled “demand
avoidance behaviour” as disablism due to the RDAer vulnerability
to internalising (Eaton 2018b; Trundle et al 2017).
- Other RDA traits can viewed as a different way of being, therefore
they are not necessarily a defect.
PARC RDA/ PDA 15 May 2018. 21
RDA AND LOOPING EFFECTS.
RDA Driven by looping effects.
- 2 types of looping effects.
- First: is when a person identifies with a label, they will change
their memories & thought patterns to align with the new identity
(Woods 2017a). Goffman (1963) notes that it is easy for persons to
align their actions with an identity.
- RDAers are thought to be susceptible to internalising (Eaton 2018b;
Trundle et al 2017). It is plausible that there is some form of this
looping effects present in some RDAers.
- Second: Hacking (1999) suggests that the connotations attached to
a human kind evolve over time as labelled persons interact with
those around them. Autism label connotations have evolved; it is
possible that the interaction with the many autistic persons who
have progressed through UK education system over the last decade
(Cutting 2017), have altered their behaviours due to how
education staff have interacted with them. Labelling effects are
expressed in those working with RDAers (Brede et al 2016).
PARC RDA/ PDA 15 May 2018. 22
RDA AND CONDITIONING.
Are RDAers being conditioned?
- Classical conditioning: when a person associates act with a stimuli.
- Operant conditioning: where a person is conditioned using rewards
and punishments (Chown 2016).
- It is argued that these strategies do not work with RDAers as they
will simply take the reward (Christie 2007).
- RDA being a form of behaviourism and the RDA strategies meant to
be used all the time (Christie et al 2012), comparable to the 40
hours per week typical of ABA.
- Autistic persons can benefit from being put in charge (Milton;
2017; Stewart 2012; Woods 2017b).
- Brede et al (2016) describes RDA strategies being used with 8
pupils. It suggests that conditioning can occur with RDAers, noting
some RDAers can benefit from such adjustments,
- Brede et al (2016) worryingly highlights examples of RDAers being
rewarded/ bribed after distress behaviour.
- There is little to prevent RDAers generalising RDA behaviours from
these processes.
PARC RDA/ PDA 15 May 2018. 23
RDA AS REBRANDED AUTISM.
What is the evidence?
- RDA overlaps, autism ADHD and ODD. Recent literature are finding
these labels in their samples (Brede et al 2017; O’Nions et al 2017;
Trundle et al 2017).
- This literature also suggests RDA is autism due to the need for
routine being found among RDAers and this is believed to separate
RDA from autism (O’Nions et al 2017).
- Participants behaviour maybe due to their experiences (Brede et al
2017).
- Labelling effects are being found in those working with RDAers
(Brede et al 2016), this means practitioners are assuming all pupil
behaviour is due to RDA.
-Autistic authors, frequently cite this effect as colouring observer’s
perspectives of their actions (Loomes 2017; Woods 2017b; Yergeau
2010).
- Looping effects, conditioning and rebranding autism can intersect
on many levels leading to the assumption a person has RDA &
contributing to RDAers displaying RDA behaviour profile.
PARC RDA/ PDA 15 May 2018. 24
RDA AS A FORM OF CONTROL.
RDA and power.
- Foucault (1978) states that power is subtle; comes with resistance
and knowledge. Power is everywhere, no one can possess it.
- A technology is a form of power that stakeholders can use to
control other people. Traditionally the state would have used the
power to end life.
- Modern days the state exercises many technologies to influence
how people act; for instance SEND Code of Practice is argued is
about preparing students to be independent economically
productive citizens (Burch 2018; Lehane 2017).
-Charities, clinicians and parents are using RDA to alter a person’s
behaviour. With fracturing and competitive education market, it is
up to each person to be responsible and learn about the latest
autism research; in this case RDA. These stakeholders have
provided commodities (Woods 2017a), for people to buy and
partake in as part of continual professional development or to
assist diagnosed RDAers in their class.
- Some RDAers are also doing the same as other stakeholders.
PARC RDA/ PDA 15 May 2018. 25
RDA AS A FORM OF CONTROL.
RDA and Stigma.
- Goffman (1963) social deviants traits: have collective denial
(demand avoidance behaviours), failing to use any opportunity for
advancement that society allows (lacks self-identity), show
disrespect to their betters (demand avoidance behaviours), lack
piety (lacks pride) and are failures of motivational schemes
[typical rewards do not work on RDAers (Christie 2007; Newson et
al 2003)].
- Labels create stigma, needs negative meanings and stereotypes.
- Stigmatised can try to control their information and resist stigma.
- Common autism + RDA diagnosis, makes escaping stigma hard.
- Typically autistic persons would emphasise their humanity, caring
nature, like to have friends and humour to resist autism stigma.
Displaying these traits is covered in RDA stereotypes and can be
dismissed due to labelling effects. If an RDAer logically objects to
these stigma, it is them showing demand avoidance behaviours.
- Viewed with RDAer internalising, stigma explains some of RDAer
mental ill health issues (Eaton 2018a; Eaton 2018b).
PARC RDA/ PDA 15 May 2018. 26
RDA AS A FORM OF CONTROL.
RDA and Internalised 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).
- Internalised ableism is when an oppressed group adopts and
expresses discourses linked to ableism.
- Parts of the RDA community has done this, there is only one RDA
truth; being it is not autism, but a distinct syndrome part of
autism spectrum (O’Nions et al 2017; Trundle et al 2017).
- Some RDA supporters react negatively and aggressively towards
any contradicting critique.
- This divides the autism (and autistic) communities, which can be
exploited to control them. For example, not uniting to argue for
more support for all autistic persons and autism carers.
PARC RDA/ PDA 15 May 2018. 27
RDA AND NEURODIVERSITY.
RDA as a threat to Neurodiversity.
- Labelling effects are a significant problem; by observers assuming
all RDA behaviour is due to RDA, it risks ignoring legitimate
concerns by autistic persons.
- Potentially dangerous when added with double-empathy problem
and autistic persons tend to operate differently to dominant social
values.
- Concerted campaign to get RDA recognised along its dominant
discourses; to get RDA into the diagnostic manuals. This is the
opposite of many neurodiversity supporters, who do not view
pathologising of autism.
- RDA is not a stable label, with different interpretations of its
criteria (Green et al 2018; Reilly et al 2014). There is evidence of
“label creep”, where traits associated with autism are being seen
as demand avoidance behaviour (O’Nions et al 2017).
PARC RDA/ PDA 15 May 2018. 28
ETHICS OF RDA.
Core ethical concerns.
- Lack of good quality research to suggest what RDA is (Green et al
2018).
- RDA can be explained by autism, which provides stronger legal
rights.
- We do not know what RDA is or the side effects of the diagnosis.
Due to the mental health problems typical in RDA and effects of
stigma.
- There is a case to argue RDA should not be diagnosed as Autism +
RDA traits.
- Lack of evidence that RDA strategies work and how often they
should be used.
- The silencing of critique running contrary to the dominant RDA
discourses.
- RDA is being driven by powerful stakeholders; disability charities,
charities and clinicians (Newson et al 2003; Christie 2007; Christie
et al 2012; Woods 2017a), traditionally this has been at the
expense of disabled persons; “nothing about us without us”.
PARC RDA/ PDA 15 May 2018. 29
FOOD FOR THOUGHT.
Which of these traits are autism or RDA?
Before concluding, a reminder of these traits.
The list of 10 traits:
- Have a unique talent e.g. role play.
- Preference for stability in e.g. best friend or routines.
- Sensory sensitivities e.g. cannot wear certain clothes or finds
certain sounds painful.
- Likes to have friends.
- Perfectionism e.g. will not stop until their work is perfect.
- Avoidance of eye contact.
- Has high anxiety.
- Restricted range of interests.
- Social awkwardness.
- Had language delay e.g. only spoke after 4 years old.
- Is clumsy.
PARC RDA/ PDA 15 May 2018. 30
CONCLUSION.
So what can be done?
- The presenter echoes Garralda (2003) who states that current
existing labels should be used where possible.
- There urgently needs to be an ethical debate on the merits of
RDA.
- There is a pressing need for research into autistic demand
avoidance behaviour (The Westminster Commission on Autism
2016).
- The Autism Act (2009), should be fully resourced to ensure all front
line LA and NHS staff receive up to date autism training, including
neurodiversity perspectives.
- The government should fully resource schools, Local Authorities
and NHS Trusts to allow them to meet their statutory duties.
PARC RDA/ PDA 15 May 2018. 32
REFERENCES.
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