[Draft] Labour Party Autism / Neurodiversity Manifesto
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.
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.
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.
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).
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.”
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.
Child Autism UK (2018). ABA and autism. Accessed online at: https://www.childautism.org.uk/aboutautism/applied-behaviour-analysis-aba-and-autism/
Chown, N. (2014). More on the ontological status of autism and the double empathy problem. Disability and Society. Vol. 29(10): 1672-1676.
Dalmayne, E. (2018). Applied Behavioural Analysis: First-Hand Accounts, Accessed online at: http://www.autismdailynewscast.com/applied-behavioural-analysis-first-handaccounts/27715/emmadalmayne/3/
Fitzpatrick, M. (2009). Defeating Autism: A Damaging Delusion. London: Routledge.
Hassiotis, A., Poppe, M., Strydom, A., Vickerstaff, V., Hall, I. S., Crabtree, J., and Cooper, V. (2018). Clinical outcomes of staff training in positive behaviour support to reduce challenging behaviour in adults with intellectual disability: cluster randomised controlled trial. The British Journal of Psychiatry, 1-8.
Hastings, R. (2013). Behavioural method is not an attempt to ‘cure’ autism, Accessed online at: https://theconversation.com/behavioural-method-is-not-an-attempt-to-cure-autism-19782
Heasman, B., & Gillespie, A. (2017). Perspective-taking is two-sided: Misunderstandings between people with Asperger’s syndrome and their family members. Autism, published online July 2017: http://journals.sagepub.com/doi/abs/10.1177/1362361317708287#articleCitationDownloadContainer
Hughes, M-L. (2008). ABA – Giving Science a Bad Name? Accessed online at: https://thepsychologist.bps.org.uk/volume-21/edition-5/letters
Keenan, M., Dillenberger, K., Rottgers, H., Dounavi, K., Jonsdottir, L., Moderato, P., Schenk, J., VireusOrtega, J., Roll-Pettersson, L. and Martin, N. (2014). Autism and ABA: The Gulf Between North America and Europe, Review Journal of Autism and Developmental Disorders. Vol. 2(2): 167-183.
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Nothing about us without us,
The Labour Party Autism / Neurodiversity Manifesto Steering Group,
You can read the Manifesto by clicking on this link: https://neurodiversitymanifesto.com/2018/09/18/labour-party-autism-neurodiversity-manifesto-final-draft-version-2018/