I hace been given permission to publish this manifesto on my blog. It is designed to raise issues concerning Autism and how a socialist approach can be discussed and actioned. With thanks to Monique Craine and Lisa Phillips of Ystradgynlais and District Labour Party
Model motion for Labour Party meetings
We welcome the drafting of a specific
Labour manifesto on Autism/Neurodiversity. We note that this process has been
overseen by a team of neurodivergent Labour Party members and supporters
convened by John McDonnell MP, and has had input from trade unions and campaign
groups.
We note that autistic, dyslexic, and
dyspraxic people, and people with attention deficit disorders, Tourette’s,
obsessive-compulsive disorders and other neurodivergent conditions experience a
great deal of hostility, distress and disadvantage in our society, and that
strong Labour policies on this issue can make a real difference to people’s
lives.
We support the draft Manifesto’s core
principles of the social model of disability; the neurodiversity approach;
opposition to austerity; socialism, democracy and solidarity; and ‘nothing
about us without us’.
We welcome the Manifesto’s policies,
including commitments to stop and reverse cuts to services; provide access to
diagnosis/recognition for all; fund and organise education to meet neurodiverse
needs; place a legal requirement on employers to make workplaces and working
conditions more equal and accessible and less hostile; and add ‘neurological
status’ as a tenth protected characteristic under the Equality Act.
We urge the Labour Party to adopt this
Manifesto as its policy and to campaign vigorously to promote it.
Further, we welcome the launch of
Neurodivergent Labour on 9 February 2019, and will publicise and support the
development of this much-needed new organisation.
We resolve to help with its set-up expenses
up to a maximum of £x [please insert a figure, depending on your
branch/constituency party’s finance].
We resolve to invite a speaker from the
Neurodivergent Labour Manifesto Group to a future meeting.
The Manifesto is structured as follows:
1. Our key principles
2. The realities of our current situation
3. Policies to challenge discrimination and
inequality
1. Key principles
Our key principles are:
• The social model of disability:
Disability is caused by society creating barriers to the equal participation of
impaired (or neurologically different) people.
• The neurodiversity approach: Humanity is
neurologically diverse; people have different brain wiring. ADHD, dyslexia,
autism, dyspraxia, dyscalculia and other conditions are neurological differences.
We want human neurodiversity to be accepted not suppressed or cured. (See our
website for neurodiverse profile prevalence figures.)
• Opposition to austerity: We need adequate
public services, benefits and wages. We oppose government and local authority
cuts to these – they are a political choice, not an economic necessity.
• Socialism, democracy and solidarity: As a
prospective Labour Party manifesto, this document bases itself on labour
movement principles. We want to challenge the deep social roots of
discrimination against neurodivergent people.
• Nothing about us without us: Policies and
services, and the Manifesto itself, must be shaped by neurodivergent people
themselves.
2. The reality of our current situation
We have the right to live independently,
with a lifestyle of our choice. But many environments and essential spheres of
life are hostile to dyspraxic, dyslexic, autistic and other neurodivergent
people:
• Diagnosis/identification and support
There is a desperate lack of diagnostic /
identification services: in some areas, there is no diagnostic service for eg.
dyspraxia in adults; waiting lists for autism assessments can be up to three
years; there is a widespread lack of public health support for ADHD, particularly
diagnostic services for adults, most of whom would not have been identified as
children. Girls are more likely to be misdiagnosed than boys and are often not
recognised as neurodivergent until later in life.
While waiting for diagnosis/identification,
many people are misdiagnosed or are medicated for conditions such as depression
or anxiety which may arise from the discrimination and lack of support they
experience arising from their neurological status. There is a higher prevalence
of mental health issues among neurodivergent people. For example, around a
quarter of those with ADHD experience depression or anxiety; 40%-60% of
dyslexic children also present with anxiety, depression or attentional issues.
Often, we only receive support once we develop
mental health problems. If we receive adequate support, this may prevent or
reduce mental health problems.
• Independent living, services and welfare
The Tory government has cut welfare
benefits and subjected claimants to punitive ‘work capability tests’.
Neurodivergent people are among those who have been driven to suicide by
benefit sanctions.
Our National Health Service is under attack
from Tory cuts and privatisation. There are barriers to our access to
healthcare, some of which have been reported by the Westminster Commission.
Studies have shown that autistic people have a significantly lower life
expectancy than non-autistic people.
There is a shortage of appropriate social
care for neurodivergent people. For example, some autistic people are placed in
institutions far from their families and support networks.
The housing crisis makes it difficult for
us to find secure housing with access to the services we need.
Working-class people rely on these services
much more than people who can afford to buy them.
• Education
Our schools are under-funded and
over-stretched. Few have specialist provision for neurodivergent students.
Dyslexic, autistic and other neurodivergent
children who are academically capable are often overlooked and their needs not
met.
School students do not want to be forcibly
‘normalised’ but neither do they want to be singled out as ‘different’.
Schools and society more widely put
enormous pressures on children and young people (including neurodivergent
youngsters), leading to more and more widespread mental health difficulties,
without adequate resources to help and support young people through difficult
times.
Teachers and teaching assistants do not get
enough training about neurodiversity. So support can be arbitrary rather than
appropriate.
Parents also receive no training in
neurodiversity.
Parents and children are too often blamed
for challenging behaviour, rather than the root causes being addressed.
Teaching and assessment methods are geared
towards neurotypical learning styles. Recent government policies eg. more
assessment by exams, has made this situation even worse.
At the end of compulsory education,
neurodivergent young people do not get enough support with transition to
adulthood – they talk of falling off a ‘cliff’ as support services come to an
end.
Neurodivergent teachers and other education
staff experience discrimination and distress in hostile workplaces.
Disadvantage continues beyond compulsory
education into further and higher education.
• Work
Only 15% of autistic working-age adults are
in full-time employment; a further 9% are in part-time employment. ADHD adults
frequently have poor occupational outcomes, such as frequently changing jobs or
long-term unemployment. This is not because only a fraction of neurodivergent
people can work: it is because workplaces are hostile environments for us. Even
if a mere 10% more autistic people were allowed access to the workforce, then
the economy could be boosted by £593.25 million per year.
Barriers and discrimination in employment
include: recruitment, interviews and assessments; the sensory environment at
work; social pressures; lack of control over working conditions; and insecure
employment.
The law, and the Tory government’s Autism
Strategy, place no obligation on employers to make workplaces and working
practices equal and accessible to neurodiverse workforces.
• Prejudice and discrimination
There is a level of bullying and hate crime
against people with ADHD and other neurodivergent conditions that should shame
our society.
This has increased with the demonisation of
people who are disabled and/or different in pursuit of the Tories’ austerity
agenda.
Profiteers and ‘quacks’ exploit the fears
of neurodivergent people and our families by marketing false and dangerous
‘treatments’ and ‘cures’.
The built environment is often distressing
and inaccessible, with an intense and increasing assault on our senses.
• The justice system
While some neurodivergent people and their
families have received useful support from the police, there have been several
reported cases of police brutality against autistic people.
Dyslexic and other neurodivergent people
can find the justice system very difficult to navigate, and are often wrongly,
harshly or unfairly judged.
Too many people are in custody who would be
better off receiving support. Reports suggest that an exceptionally large
number of prisoners meet the diagnostic criteria for ADHD.
Equality law requires us to prove that we
are disabled – in terms of things that we cannot do – in order to claim legal
protection against discrimination and gain support eg. at work.
• Lack of understanding
There is too little research into
neurodiversity and neurodivergent people’s needs; and what research there is
can focus too heavily on the search for cures rather than on developing
understanding and support.
When others (eg. professional bodies,
charities, clinicians) speak for and/or make decisions for us, however
well-meaning, then our views and needs can be misrepresented.
3. Policies to challenge discrimination and
inequality
• Diagnosis/identification and support
Diagnostic/identification service available
to all, without delays, which recognises neurodivergent conditions in girls and
women as well as in boys and men. Assessment as to whether the individual has
other, related conditions.
Adequate support following diagnosis, for
example coaching from other neurodivergent people.
• Independent living, services and welfare
Stop and reverse cuts; expand services.
Resource local government to provide
services.
Use statutory guidance to ensure that local
authorities carry out the requirements of the Autism Act through
decision-making forums that include representatives of autistic people.
Scrap Work Capability Assessments; adequate
benefits for all who need them.
Equal and adequate health and social care:
restore the NHS; reverse privatisation.
Provide appropriate, publicly-controlled
and accountable care close to home, family and/or other support networks.
Provide necessary social housing and
support to enable independent living. Secure tenancies and protection for
private renters.
Consideration of neurodiversity in domestic
violence services.
Neurodiversity training for all public
service staff.
Provision for autism service dogs with the
same status and rights as other assistance dogs.
• Education
Well-funded, publicly-run and accountable
schools.
Smaller class sizes.
Varied teaching and assessment methods,
recognising diversity in people’s learning style and pace.
Neurodiversity training for all teachers
and teaching assistants as part of core training.
Provision for neurodivergent students and
all schools, colleges and universities.
No cuts in support through Education and
Health Care Plans.
Consideration of neurodiversity in early
years and SureStart.
Education about neurodiversity in the
curriculum, including support with social interaction.
Take the stress out of studying. Take
measures to support the mental health of teenagers (including neurodivergent
teenagers).
• Work
Place a legal requirement on employers to
make workplaces and working conditions more equal and accessible and less
hostile, including through adopting a neurodiversity policy and training for
all staff.
Job applications and interviews to be
accessible, non-discriminatory, and include support – for example, alternatives
to written applications for dyslexic applicants.
Replace Work Capability Assessments with
Workplace Accessibility Assessments.
Pursue a full employment policy, with the
right to an appropriate, secure job for all who can work.
Remove the cap on Access to Work.
Restore Remploy as an employer of disabled
people.
Ensure that anti-discrimination law covers
volunteers as well as employees.
Support for self-employed neurodivergent
people, recognising that commercial and reporting requirements may be difficult
to meet.
• Prejudice and discrimination
Apply the principle of Universal Design to
make the built environment less distressing and more accessible.
Apply a strategy to tackle bullying and
hate crime, including compiling accurate statistics, and recognising in law
that that ‘hate crime’ can be aimed at neurodivergent people.
Ensure that all treatments and therapies
aimed at autistic and other neurodivergent people are properly regulated.
Legislate against quack ‘cures’ such as MMS (bleach) which harm autistic and
other neurodivergent people.
Investigate the concerns of autistic people
about interventionists such as Applied Behaviour Analysis and similar
‘treatments’ that aim to ‘make autistic people indistinguishable from their
peers’ and which many consider to be abusive.
• The justice system
A review of the workings of the justice
system to ensure that it is accessible to people of all neurologies.
Neurodiversity training for all justice
staff.
Ensuring that non-harmful unusual
behaviours are not criminalised, and that people receive support rather than
punishment if an intolerable environment causes disruptive behaviour.
Support and rehabilitation for offenders
with ADHD and/or other neurodivergent conditions.
Restore Legal Aid and scrap Employment
Tribunal charges.
Strengthen the law:
o ‘Neurological
status/condition/divergence’ to be an additional protected characteristic under
the Equality Act, with the same legal protections as disability.
o Strengthen the Public Sector Equality
Duty and extend it to the private sector.
o Develop the Autism Act to include eg.
obligations on employers.
• Lack of understanding
Education and training about neurodiversity
at all levels: for political decision-makers; employers; administrators of
justice; education staff; public service providers; (prospective) parents; etc.
A campaign to raise public awareness of
neurodiversity and neurodivergent conditions, including through GPs’ surgeries
and promotional materials.
More resources for research, in areas
guided by the needs and concerns of neurodivergent people, including research
into historical mistreatment of neurodivergent people.
Ensure that when the government is
considering new policies (eg. citizens’ income), it considers the impact on all
of our neurodiverse population.
Appendix to the Labour Party Autism /
Neurodiversity Manifesto
“A critique of the use of Applied
Behavioural Analysis (ABA):
on behalf of the Labour Party Autism /
Neurodiversity Manifesto Steering Group”
Dr. Damian Milton, 2018
“…right from the start, from the time
someone came up with the word ‘autism’, the condition has been judged from the
outside, by its appearances, and not from the inside according to how it is
experienced.” (Williams, 1996: 14).
This report looks into the commonplace
implementation of Applied Behaviour Analysis (ABA) and Positive Behavioural
Support (PBS), criticisms of these approaches, and why they are not usually
supported by neurodivergent communities, before concluding with some
recommendations for future practices.
ABA can be defined as the application of
techniques based upon the philosophy of radical behaviourism (pioneered by B.F.
Skinner and others). ABA seeks to utilise these theories of learning in order
to alter behaviour. Contemporary theory and practice, despite moving beyond the
‘methodological behaviourism’ that prioritised behaviour modification, to the
use of ‘functional assessments’ of the ‘antecedents, behaviour, and
consequences’ of behaviour within a context (or ABC method), still primarily
focuses on reducing behaviour deemed ‘aberrant’ or ‘inappropriate’ and
increasing behaviour deemed socially ‘valid’ and ‘acceptable’. By following the
principles of radical behaviourism, thoughts and emotions are treated as
behaviours operating in the same ways as observable actions (Research Autism,
2018). Such a philosophy is criticised by other schools of Psychology or
Philosophy of Mind (Stanford Encyclopedia of Philosophy, 2015). Proponents of
ABA suggest that it is a ‘natural science’ of behaviour, rather than a ‘social
science’ dependent on hypothetical constructs.
“Behaviour Analysts are not distracted by
the many different theories of the causes of autism.” (childautism.org.uk,
2018).
Critics would suggest that rather than
being an objective natural science however, it rather uses a flawed set of
conceptual concepts at the expense of excluded concepts that have developed
through other disciplines and perspectives. Despite being a general theory and
practice, it is often incorrectly assumed to be a specific intervention used
with autistic people (by both some proponents and critics). The history of ABA
is not without significant controversy outside of working with autistic people
though. One of the pioneers of using ABA to make autistic people
‘indistinguishable from their peers’ was Ivar Lovaas who also utilised the
method as a form of ‘conversion therapy’ for transgender children:
“Rekers and Lovaas conducted the treatment
in response to the parents’ concerns not the child’s. Furthermore, they
challenged all four of the reasons Rekers and Lovaas stated for going forward
with the treatment, including the need to relieve the boy’s suffering, the idea
that the “problems” would continue into adulthood, that an early intervention
may be the only treatment that worked, and that “the parents were becoming
alarmed.”” (Wilhite, 2015).
These remarks are eerily familiar with
regard to the reasons given as to why ABA is often administered upon
neurodivergent people. In the UK, a somewhat less extreme version of ABA has
taken shape in the form of Positive Behaviour Support (PBS):
“Another way to decide what to teach a
child with autism is to understand typical child development. We should ask
what key developmental skills the child has already developed, and what they
need to learn next. The statutory curriculum in the countries of the UK also
tells us what children should learn. Then there are pivotal behaviours that
would help further development: teaching communication, social skills, daily
living or academic skills that can support longer-term independence and
choices.” (Hastings, 2013).
Despite contemporary behaviourist theorists
such as Hastings (2013) who favour PBS claiming to use a non-normalising social
model approach, it is clear from the above passage that a normative approach to
child development and education is being utilised. Such a view can be
contrasted with autistic and wider neurodivergent and disabled activist
accounts regarding behavioural intervention. A recent multicentre, cluster
randomised controlled trial conducted by Hassiotis et al. (2018) however found
no ‘treatment effects’ in terms of reductions in ‘challenging behaviour’
between those being cared for by staff trained in PBS compared to those who
were not, and that further research should: “…endeavour to identify other
interventions that can reduce challenging behaviour.” (Hassiotis et al.,
2018:1).
According to the UK Society of Behaviour
Analysts, the use of ABA should be based on a number of values, including a
focus on the ‘individual’ and on ‘skill acquisition’. “Behaviour analysts
ensure that the goals, methods, and outcomes of any intervention are important,
understandable, and acceptable to the person whose behaviour is being changed,
as well as to those who care about the person (e.g., parents, carers,
teachers).” (UK-SBA, 2018).
Given that ABA is practised upon young
children and less verbally articulate autistic people, coupled with the lack of
understanding often found in non-autistic people’s interpretations of autistic
ways of being and actions (Milton, 2012, Chown, 2014, Heasman and Gillespie,
2017, Sasson and Morrison, 2017), these values cannot be ensured. The ethical
decisions as to what behaviour is to be addressed and why is left to carers and
professional advisors. It is also notable that the behaviour often deemed in
need of change by professionals for ‘social validation’ are not as important,
understandable and acceptable to the autistic person expected to perform and
comply.
Similar issues would also be pertinent with
all neurodivergent identities.
“Any decisions made about how behaviour
will be assessed or changed are sensitive to the individual circumstances of
the person and are aimed at improving quality of life.”
(UK-SBA, 2018).
Yet, when quality of life is defined in
normative terms and without the input of neurodivergent people, or even
deliberately not addressing critique, it can only too quickly become ableist
oppression. Behaviour analysts suggest that ‘skill acquisition’ should be seen
as primary goal of intervention. This places the pressure on the neurodivergent
person to conform to society, whilst not making the same effort in return
(Milton, 2014, 2017) “…to address quality of life issues by improving skills
that can remove barriers to learning and facilitate independence and best
practice utilises methods based on ABA…” (Keenan et al. 2014: 167).
The narrative presented by some leading
advocates of ABA see autism and other neurodevelopmental ‘conditions’ as
barriers to learning, and ABA as a way of facilitating independence and
improving skills, and that this will all lead to a better quality of life. This
statement is however highly normative, and unsympathetic to a social model of
disability. Criticisms of ABA are often misrepresented by ABA proponents as a
caricature, without attempting to engage fully with those criticisms. This is
particularly relevant when such practices are implemented on potentially
vulnerable people.
“One expects lobby groups to give vent to
fixed and emotionally charged views, but one expects more from scientists.
Tolerance of scrutiny, acceptance of criticism, and objectivity in experimental
approach and the interpretation of outcomes are expected. A discipline that
makes extravagant claims of its methods, overstates its scientific status and
has difficulty agreeing on definition of its terms will struggle to achieve
scientific credibility.” (Hughes, 2008).
For many neurodivergent activists, the
normalisation agenda inherent in such approaches is not a caricature, but a
felt experience of living in what is perceived to be an inherently ableist
society. Who gets to define what is ‘appropriate’, ‘challenging’, ‘disordered’,
and ‘socially important’, is always imbued with unequal power relations (Mason,
2005). A denial of the directly felt harm of those that have had such methods
implemented on them is often met with increased anger and frustration from
members of the neurodivergent communities, as well as some parents (for
examples see: realsocialskills, 2018, Omum2, 2018, Dalmayne, 2018), yet despite
this, activists have attempted to explain what their contentions are, even
making distinctions between differing experiences of ABA (Unstrangemind, 2018).
The impasse between these perspectives is not just over the ideological purpose
that a method is set to, but also the processes of ABA-based practices.
Although Milton (2016) found that
interventions akin to PBS were popular amongst parents, this was contrasted
with the views of autistic people. Tensions between these views are likely to
persist, but a greater understanding of the reasoning behind why differing
stakeholders are attracted to differing ideologies and practices can help all
to build a common language in which to debate the issues. Such a way forward is
being held back by those with a dogmatic adherence to ABA however, and a focus
purely on the reduction of so-called ‘challenging behaviours’.
“…the whole ABA movement appears
increasingly more like a cult than a science: there is a charismatic leader, a
doctrine, a failure to engage with criticisms, inquisition and denunciation of
any who criticise (however mildly), misrepresentation of critics, and
proselytising exercises to gain more converts and spread the word.” (Jordan, 2001,
cited Fitzpatrick, 2009: 141).
A study by Remington et al. (2007, cited
Fitzpatrick, 2009) compared those who had home-based ABA to those who did not,
over a two-year period. Using measures of intelligence, language use, daily
living skills, and a statistical measure of ‘best outcomes’, the majority made
no significant advances. Magiati, Charman and Howlin (2007) found no
significant differences in a range of outcome measures either, although large
differences were found regarding outcomes within both control and experimental
groups. Hogsbro (2011, cited in Milton, 2016) found that on average, ABA
provision had a negative impact on a number of standardised measures. Yet, the
parents of children on such programmes were found to hold the highest expectations
for their children’s educational progression, and professionals and parents
using this model subjectively rated improvements higher than all other groups.
Similar findings were also found by Kupferstein (2018).
“I had virtually no socially-shared nor
consciously, intentionally expressed, personhood beyond this performance of a
non-autistic ‘normality’ with which I had neither comprehension, connection,
nor identification. This disconnected constructed facade was accepted by the
world around me when my true and connected self was not. Each spoonful of its
acceptance was a shovel full of dirt on the coffin in which my real self was
being buried alive…” (Williams, 1996: 243).
In this quote, the late Donna Williams
(1996) suggests that by learning by rote how to act as a nonautistic person can
produce a ‘masking’ effect and be detrimental to long-term well-being and
mental health. Williams (1996) directly criticised the use of behavioural
techniques such as ABA for only working on function and appearance, and for
their lack of fit with autistic perceptions. For Williams, such techniques:
“…may feel like a senseless ritual of
abuse, regardless of its ‘good’ intentions.” (Williams, 1996: 51).
Kupferstein’s (2018) recent study regarding
the potential links between ABA, post-traumatic stress disorder (PTSD) and
autistic people found that respondents across all ages who were exposed to ABA
were 86% more likely to meet the PTSD criteria than respondents who had not
been exposed to ABA practices.
Major issues with the ABA theory and
practice:
– What behaviours are reinforced and deemed
as functional and of social importance and relevance is chosen by an outsider
– ‘Reinforcements’ may be inappropriately
given (e.g. the bombardment of emotionally laden praise, and hugging, and
punishments being potentially internalised as rewards such as timeouts)
– Rote learning can lead to training people
to behave as if their problems do not exist, or lead to ‘autopilot’ responses
– The claim that ABA will suit everybody as
an applied method – it clearly does not
– The focus on behaviour at the detriment
of subjective understanding and cognition
– Often focuses on compliance and founded
on normative assumptions
– Reduces opportunity for natural curiosity
and exploration
– Utilises ‘reinforcements’ that are often
extrinsic rather than intrinsic motivations for activities
– The lack of generalising of newly learnt
‘skills’
– Sometimes punishment is endorsed as a
‘last resort’
– The intensity of programs (often
suggested that one works on ABA programs for forty hours a week).
Instead, it is recommended here that
practices should:
– Take a holistic and person-centred
approach which therefore takes into account neurodivergent sensibilities,
sensory perceptual differences, subjective accounts, cognitive theory, and a
social model of disability
– Building understanding and communication
between all involved
– Enabling environments to be more
accessible
– Reducing direct confrontation
– Ethical considerations must be built in
to every step of the process of acquiring professional competencies
– Use of dangerous restraint methods and
forced seclusion should be seen as disciplinary offences
– Rather than focusing on perceived
weaknesses and absent skills, utilise strengths and interests
– Neurodivergent perspectives must be built
in to every step of the process of acquiring professional competencies
– Building local expertise and communities
of practice, drawing upon multi-disciplinary expertise, but places the
neurodivergent person at the centre of considerations.
Although similar criticisms can be made of
other normative interventions that are administered upon neurodivergent people,
few have as poor a track record in terms of participation as ABA and PBS.
Although individual practice by parents and indeed professionals may not seek
normalisation in the use of ABA, the flaws in its theory and implementation
mean that we should be looking beyond its scope. Therefore the endorsement of
PBS by the Care Quality Commission, alongside the widespread use in schools and
mental health services needs urgent review. As a way forward, it is suggested
here that the person-centred and socially sensitive approaches being developed
by groups such as Studio3 and AT-Autism are promising and that these need to be
tested with high quality research.
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Nothing about us without us,
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You can read the Manifesto by clicking on
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