Our draft is structured as follows:
1. Key principles
2. The realities of our current situation
3. Policies to challenge discrimination and inequality
- Key principles
- 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. Autism, dyslexia, ADHD and others are neurological differences. We want human neurodiversity to be accepted not suppressed or cured.
(Our website www.neurodiversitymanifesto.com will shortly set out Neurodiverse profile prevalence figures).
Opposition to austerity:
We need adequate public services, benefits and wages. Government and local authority cuts to these 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 autistic and other neurodivergent people.
- The reality of our current situation
We have the right to live independently, with a lifestyle of our choice. However, many environments and essential spheres of life are hostile to autistic and other neurodivergent people:
- Independent living, services and welfare
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. 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.
Often, we only receive support once we develop mental health problems. If we receive adequate support, this may prevent or reduce mental health problems.
The Tory Govt 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 recently reported by the Westminster Commission on Autism. A recent study showed that autistic people have a significantly lower life expectancy than non-autistic people.
There is a shortage of appropriate social care for autistic and other neurodivergent people. 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.
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’.
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 kids 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.
As 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.
Autistic and other 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 neurodivergernt 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 crimes against autistic and other neurodivergent people 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.
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.
- 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.
- Policies to challenge discrimination and inequality
- Independent living, services and welfare Diagnostic/identification service available to all. Stop and reverse cuts; expand services. Resource local government to provide services. Ensure that local authorities carry out the requirements of the Autism Act through decision-making forms 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.
- Education Well-funded, publicly-run and accountable schools. Smaller class sizes. Varied teaching and assessment methods. Neurodiversity training for all teachers and teaching assistants as part of core training. Provision for neurodivergent students and all schools and colleges.
- Work Place a legal requirement on employers to make workplaces and working conditions more equal and accessible and less hostile. 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.
- 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.
- The justice system A review of the workings of the justice system to ensure that it is accessible to people of all neurologies.
Strengthen the law:
- ‘Neurological status/condition/divergence’ to be an additional protected characteristic under the Equality Act.
- Strengthen the Public Sector Equality Duty and extend it to the private sector.
- 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. More resources for research, in areas guided by the needs and concerns of neurodivergent people.
I think this is an excellent project and I applaud the work that has been done on this. I work as a specialist SEND teacher in a Local Authority integrated support service; I work with children and young people with autism spectrum conditions and those with a range of other needs. I am also a Labour Party member and National Policy Forum representative. I would suggest that this manifesto broaden it’s scope and becomes a policy that covers all children, young people and adults who have special educational needs. The needs of those with autism spectrum conditions, dyslexia, dyspraxia and attention needs are very important, but there are many children, young people and adults who have learning difficulties without specific diagnoses; these children and young people are ‘nerodivergent’ too. These children, young people and adults may be described as having speech, language and communication needs and/or more general learning needs/difficulties/disabilities, and their needs require acknowledgement, even though they may never have a diagnosis of anything specific. At the moment I think this draft conflates medical models and social models of disability. The children, young people and adults that are currently most poorly served are those with learning needs and who don’t have diagnoses. Whilst I think diagnosis is important, the most important thing is to identify the needs of children, young people and adults, irrespective of whether those needs are associated with a specific diagnosis or not, and meet those needs. If diagnosis become central to provision, those who do not have a diagnosis, and who may never receive a diagnosis, may not have their needs met. Diagnosis is per se a medical model of disability – as ‘treatment’ becomes dependent on diagnosis. A social model of disability is based upon need identification and the delivery of services and support to meet those needs; and this model serves those with diagnosis and those without diagnoses. When services for children, young people and young people become over dependent on diagnosis, many children, young people and adults with special educational needs do not receive services to meet their needs. In summary, I feel diagnosis is important, but I think the most important things is need identification, whether a child, young person or adult has a diagnosis or not, so that appropriate services and support is identified and made. This is a particularly important issue at present because in an environment where there are extensive cuts to services with children, young people and adults with special needs a model based upon diagnosis can become a way of rationing scarce resources – i.e. only those with diagnosis end up receiving resources. One of the biggest challenges at present is to maintain the educational and health support services that currently exist and prevent further cuts to services, and work to restore services that have been cut. In an environment were access to NHS services, which are central to diagnosis, are so limited it is essential that we don’t not provide educational and social services provision to children, young people and adults who have needs but no diagnosis because access to a medical professionals (e.g. paediatricians, clinical psychologists etc,) is so limited. I hope this is useful. Sim Elliott
LikeLiked by 1 person
Hello Sim and many thanks for such a positive and thoughtful input.
The social model (Oliver, 1990) is our guiding principle: good practice in all aspects of public life including education, health, social care, housing, the justice system and so forth would mitigate against many unnecessary barriers that stop neurodivergent people (& many who are neurotypical, arguably) from reaching their full potential. That is the model we campaign for.
My own personal wish is to re-frame / re-design all these and other sectors from the ground up, putting people’s diverse needs and preferences at the centre of the process – which would be based on noteworthy professional practice (as informed by the relevant professional bodies’ codes of practice plus the acclaimed literature & research in that particular field e.g. in teaching & learning).
This may make the current strong need for good and speedy diagnoses arguably less vital*: however, even if this amazingly huge paradigm shift is finally and fully achieved, it has a very long way to go from where we are: meanwhile, a diagnosis can facilitate the process of self-knowledge / acceptance as the gateway to individualised focused support which enables the person to work to their strengths and enhance their learning / work experience etc. That experience & entitlement is variable is an issue yes, but the principle holds.
Arguably, without a combination of the medical model (diagnosis) & the social model (recognising & valuing difference, finding innovative strategies and approaches) – currently, anyway-) – how can we really talk about inclusive education / employment / life chances etc?
Its not exactly perfect, hence the Manifesto calling for change and for a Minister for Neurodiversity: this terminology deliberately includes everyone, reflecting, in my view enabling the move from a currently integrative model (based on the middling ‘norm’) – square pegs not fitting into round holes with ‘support’ often just bolted on due to current organisational models that arr ‘norm-referenced’- to a truly inclusive model which is clearly & inherently so very different.
We can dream… but also positively act, together, to engage with the ideas and practical suggestions that are aimed at making education, work, care etc fit for purpose for all – and not fail so many people, whether neurodivergent or not.
It brings to mind the quote (author forgotten – sorry) that ‘…what is good practice for dyslexic people is good practice for all’.
Hope that is a helpful response
Annie 🙂
LikeLike
Thanks for writing this draft manifesto. It’s definitely needed. And successful outcomes as a result of the manifesto are desperately needed.
The draft is very good. I endorse it. However I would add the following points for consideration.
Fundamentally we must be cultivating a much more compassionate society on every front. Many aspects of our current society are brutal to us all, it’s just that some of us seem to perceive them more clearly or have experienced them more frequently or harshly. Pickett and Wilkinson’s demonstration (The Spirit Level – Why More Equal Societies Almost Always Do Better, 2009) of how inequality is bad for everyone is a crucial point here.
The introduction of a Universal Basic Income would not only significantly improve the lot of the neurodiverse but also many other currently disadvantaged individuals.
Society would do well to recognise that neurodiverse people could have a hefty back catalogue of failed and frustrating experiences in work and other social situations and that this may result in an apparent lack of enthusiasm, timidity or other behaviours neurotypicals might regard as ‘inappropriate’. Efforts should be made to get people to realise this and not judge neurodiverse people for it. This is one aspect of cultivating a much more compassionate society.
Public servants should be educated about neurodiversity as a matter of urgency. They should be taught to be alert for it in the first place and develop an awareness of their own reactions and judgements. For example; they should be able to spot when they have a thought about someone such as “This person is a bit weird” and then rapidly recognise that that person may seem a bit ‘weird’ because of neurodiversity. Police, medics and teachers should be first in line to receive education and training on this swiftly followed by anyone else in a position of authority in public and private service.
We must really breach the boundary of antidepressant dispensing as a response to any distress or lack of ability to cope with elements of our society. Provoking discussion about how we might want to live life more contentedly on Earth should help many people who currently have a sense of disappointment with their lives, not just those who are sidelined due to their neurodiversity. Of course the powers that be won’t like this but since we already live beyond the planet’s capacity to sustain us this is a discussion better had sooner rather than later. For example; there is a lot of din created by the profligate use of motorised machinery. Much more judicious use of machinery would help to create a pleasant atmosphere, offer safer roads and other public spaces and reduce toxic and carbon emissions. Good for everybody! Similarly, far greater access to green spaces within towns and cities would bring benefit in numerous ways to the neurodiverse and neurotypical alike.
Tiny house communities (preferably with their own space for growing some food) should be implemented as a delightful, resourceful solution to the housing crisis.
Educators and employers should recognise the array of learning styles that people have and take these into account much more than at present. For example; some people generally learn best by teaching themselves and struggle to assimilate information if they are required to learn in group situations. Flexibility in accommodating preferred learning styles should be adopted whenever possible.
Mentors who have genuine compassion for autistic and neurodivergent people should become commonplace in any public arena. A mentor for the neurodiverse is a compassionate, caring, well informed and capable individual who can act as an interpreter (as it were) between a neurodiverse person and a neurotypical person. Such people are particularly valuable in workplaces and can make a lot of difference to the experiences of a neurodiverse person as they struggle in a neurotypical world.
Thanks again for composing the draft. And thank you for taking my views on the draft into account.
LikeLiked by 1 person