Positive Policies not Pathologising Patronisation

A response to the March 2019 Thinking Autism article: ‘What is wrong with The Labour Party’s “Autism Neurodiversity Manifesto” and autism identity politics?’ https://thinkingautism.org.uk/labour-party-neurodiversity-manifesto-identity-politics/

By Janine Booth on behalf of the Neurodivergent Labour Manifesto group

One of the most striking things about the Thinking Autism article is something that it does not include. It contains no disagreement with any of our Manifesto’s policies. None at all. Instead, it attacks our principles and picks at our wording.

We are more than happy to defend our principles, and do so below, but let us first remind readers of our Manifesto’s policies:

“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 in 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 interventions 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.

Strengthen the law:

– ‘Neurological status/condition/divergence’ to be an additional protected characteristic under the Equality Act, with the same legal protections as disability.

– 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.

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.”

We believe that this set of policies constitutes a ground-breaking programme of social reform that can radically improve the lives of autistic and other neurodivergent people. We have received huge support from those people, their families and allies, for our proposals.

Thinking Autism’s article does not state that it agrees with these policies or disagrees with them, which is somewhat remiss in an article that presents itself as a critique of the Manifesto. You would expect a lengthy article claiming to explain ‘what’s wrong with’ a manifesto to at least discuss its policies, wouldn’t you?

So we ask Thinking Autism (TA):

Do you agree with our policies? If not, which do you disagree with and why? If yes, why undermine a platform which would deliver such significant improvements to the lives of people you claim to care about?

It seems from the article that Thinking Autism dismisses our set of radical, life-improving policies because it does not approve of the liberatory principles on which they are based, seeing these as a threat to its pathologising approach to neurological variance.

We will now examine each of its criticisms.

The social model of disability

TA argues that ‘The presumption that disability is caused by societal barriers to equal participation does not reflect reality’. However, the social model does not make that presumption. Rather, it defines disability as barriers created by society, and uses the word ‘impairment’ to describe problems or shortfalls caused by the medical condition itself.

TA argues that the social model of disability is undermined by the ‘fact’ that ‘our current society has done a great deal to remove many barriers’. This does not undermine the social model at all. In fact, the greater accommodations made for disabled people have come mostly during the four decades since the development of the social model. It has been precisely the progressive adoption of the social model that has encouraged the approach of identifying barriers in order to remove them.

TA’s article misunderstands the ‘medical model’, presenting it as meaning any kind of medical consideration. The ‘medical model’ is a term used by supporters of the social model to refer to an approach which sees disabled people’s difficulties as arising entirely from their individual pathology, from their medical condition. Thus, TA’s accusation that ‘By dismissing the medical model of disability entirely, the health, well-being and disability of a significant number of people is being dismissed as well’ is entirely inaccurate.

Health problems in autistic people

TA’s article asserts that ‘individuals with autism frequently have significant impairments in sensory processing and motor function, as well as in many medical domains. Multiple studies show high rates of health problems in individuals with autism, including epilepsy, gastrointestinal problems, allergies, major depression, schizophrenia, and many others.’ It is ironic that this statement is used as a criticism of a document – our Manifesto – the very first policy point of which includes the commitment to ‘Assessment as to whether the individual has other, related conditions.’ Yes, we are aware that many autistic people have co-occurring health conditions.

However, there are nuances here that TA overlooks. Firstly, some of these co-occurring conditions e.g. depression may arise from autistic experience rather than directly from autism itself. Depression is relatively common in autistic people – but is that because depression is a symptom of autism, or because our society makes autistic people depressed?

Secondly, where TA refers to ‘impairments’ in sensory processing and motor function, it may well be including what we would consider to be differences in these things – including such significant differences from the standard or typical that the person concerned experiences significant disability.

Thirdly, it may well be that autistic people with co-occurring conditions are more likely to be recognised as autistic, so the statistics may be skewed to an extent. For example, many people receive an autism diagnosis having first sought help for, say, anxiety or depression. They will register on the statistics as autistic people with a co-occurring mental health condition, while an autistic person who does not have a mental health problem and has not sought help and not been diagnosed as autistic will not register in the statistics at all.

Fourthly, even if these conditions do occur more frequently in autistic people, that does not mean that they are part of, or caused by, autism. As the NHS states, ‘It’s important that these conditions are identified and treated properly, and not thought of as part of the autism spectrum.’

TA argues that ‘those people with autism who require the most support, who face the greatest barriers, are also far more likely to be seriously ill’. This is, of course, a truism. If you are more ill, you need more support. There is nothing in our manifesto that denies this, and plenty which offers the support needed, not least of all: ‘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.’

TA claims that ‘scientists now recommend approaching autism as a chronic health condition’. This is disingenuous and highly selective. The link it offers is to another of its own articles, which refers to a very small sample of limited research with no evidence of any consensus among ‘scientists’ to label autism in this way.

Neurological differences

It is instructive that TA’s article refers to divergence in neurology as ‘under- and over-connectivity’. This is an entirely subjective framing, which asserts neurotypicality as the norm, and every different brain as having too many or too few connections.

Contrary to TA’s accusation, our manifesto does not claim that a person’s full and final neurological make-up is necessarily and always ‘present from birth’. Neural pathways can be created by early experience and by later trauma. So, once again, TA makes false assumptions, reading things into our manifesto that are not there.

Thinking Autism’s search for a cure

Thinking Autism makes the bizarre claim that ‘To cure means simply to provide relief from symptoms’. This is a perverse rewriting of the English language. There is one dictionary definition that uses this terminology (OED), but it then gives two sub-definitions that clarify that this ‘relief’ is to be brought about by the elimination of disease. In everyday English, no-one understands ‘cure’ to mean simply relieving symptoms: they understand it to mean the defeat or removal of a disease or condition. If TA’s definition were correct, then society has already found the cure for the common cold! After all, there are plenty of treatments that provide relief from its symptoms.

TA steps up its hyperbole in demanding people’s right to seek a cure for autism, and accuses our manifesto of removing that option. We accept that some autistic people would like to be cured, and that some parents would like to cure their children. We do not accept that this alone establishes that the pursuit of a cure is ethical. There are gay people who would like to be cured of their homosexuality, and parents who would like to cure their gay children. There are, unsurprisingly, more of these in societies which are virulently homophobic.

The desire for a cure is genuine and understandable, but it is not a substitute for tackling the various ways in which society distresses, excludes, discriminates against and traumatises autistic people. Many of those who would like a cure are seeking relief from distressing experiences which they believe to be caused by autism (having been told so by groups such as Thinking Autism) but which are rooted in the interaction between being autistic and living in an autism-hostile environment.

In fact, our manifesto calls for a ban on ‘quack ‘cures”. The fact that TA takes this to mean any mention of cures at all seems to suggest that it sees all cures as quackery. Why, then, does it demand so ferociously the right to seek them out?

However, TA is not just committed to the search for a cure for autism – it claims that such a cure has already been found! It asserts that ‘Research shows that people who once had autism can recover from it’. This is a bizarre claim that contradicts all credible scientific evidence. You will not find credible research that backs this assertion.

TA also argues that ‘debilitating symptoms of autism can be ameliorated, and even disappear entirely’ and that ‘effective treatments that are individual-specific and grounded in precision medicine can reduce and even eliminate the symptoms that constitute a diagnosis of autism’. It is important to consider the term ‘symptoms of autism’, to recognise the nuances of what it implies. Some symptoms of autism – such as avoiding eye contact or many forms of stimming (eg. rocking) – are not harmful, and we believe that it may be abusive to try to suppress them. Insisting that an autistic person look other people in the eye is the modern-day equivalent of tying left-handed people’s left arms behind their backs. Other traits considered to be symptoms of autism may be more accurately considered to be symptoms of autistic experience in a hostile society – for example, when a person responds to excessive sensory input by hurting themselves.

For sure, these ‘symptoms’ can be reduced – sometimes beneficially, sometimes harmfully – but it is not autism itself that is being reduced or eliminated.

Lived experience

Thinking Autism’s article repeatedly claims that ‘lived experience’ endorses its views and contradicts ours.

We remind readers that our manifesto was put together by a team of people all of whom have extensive lived experience of autism and/or other neurodivergent conditions. It was put together in a two-year process which brought in the input of thousands of others with lived experience.

By contrast, Thinking Autism claims to represent ‘hundreds of UK families and individuals who are living with autism’. We note that this is a very small proportion – less than one per cent – of autistic people and our families, and that by its own admission, the large majority of its members are relatives of autistic people rather than autistic people themselves.

While TA claims authority for its views from their base in ‘lived experience’, it dismisses ours as ‘identity politics’, the go-to insult for those who wish to ignore the voices of people speaking out about their own experiences of oppression. It then makes the bizarre and unfounded accusation that we all have ‘a self-image based solely on [our] neurological (dys)function’ and that we use this to impose our beliefs on others. We repeat that this is a manifesto: a set of policies that we would like to persuade people to support. It is not an imposition, and it is a very poor form of argument to suggest that it is. Does TA generally accuse political parties or other organisations of trying to impose their views on others when they publish manifestos? Or does it reserve this absurd allegation only for a Manifesto drafted by autistic and other neurodivergent people?

Autistic prevalence

Thinking Autism claims that ‘there are ever increasing numbers of people with autism’. It again misses important nuance by assuming that increased rates of diagnosis are the same as increasing prevalence. In doing so, it overlooks the impact of broadening diagnostic criteria and increased awareness of autism, and of the increasingly distressing experiences, for example of co-occurring mental health conditions, that drive people towards diagnosis.

Although there are many different views and understandings of autism, there are some facts on which all credible authorities agree. TA places itself outside this consensus with its risible assertion that autism is not a lifelong condition. It even has the audacity to describe the scientific consensus as ‘scientifically unsupported’. This would be laughable if its implications were not so serious and damaging.

The ‘cost of autism’

Thinking Autism quotes the cost of autism in the UK as £32 billion per year. Its assumption seems to be that this entire cost is caused by autism itself, rather than by societal barriers to autistic people. For example, if an autistic person is made so anxious by sensory overload that they require hospitalisation, or so depressed by bullying that they require medication, or becomes unemployed because their workplace was not suitable for them, we would contend that the cost has been incurred by society’s failure to accept and accommodate autistic people rather than by those people’s autistic brain structure. As our Manifesto points out, ‘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.’

TA justifies economic rationing of measures to make autistic lives easier, arguing that its preferred approaches – ‘treating’ and ‘curing’ autism – be prioritised. It demands that its own agenda receive public funding in preference to the demands of autistic people. It accepts rather than challenges the political narrative that claims a shortage of money but can readily fund handouts to big business and political bribes to prop up the government.

Regulating treatments

Thinking Autism accuses our Manifesto of asserting that ‘researchers should not investigate treatments for underlying causes in order to improve the functioning and reduce the disabling symptoms of autism’, calling this an ‘absurd argument’. TA’s article provides no extract from our manifesto to show that we argue this – because we do not. This is a fiction, yet another misreading or falsehood in an article littered with them.

In fact, our Manifesto strongly supports research, demanding ‘[m]ore resources for research, in areas guided by the needs and concerns of neurodivergent people.’ If, as TA repeatedly suggests, the needs and concerns of autistic people include investigating treatments then that is what will happen if our Manifesto is carried out.

TA dismisses our manifesto’s objection to profiteers and quacks exploiting the fears of neurodivergent people and our families as ‘straw man fallacy’. But the marketing of false and dangerous ‘treatments’ and ‘cures’ is not a straw man (an exaggerated or imaginary enemy); it is very real and of great concern. From exorcism to bleach enemas, electric shocks to chelation, autistic people are being harmed and abused in the name of ‘treating’ or ‘curing’ their autism. Our Manifesto wants this to be investigated and regulated, with proven ‘quack cures’ banned. Does Thinking Autism not want this? If not, why not?

‘Nothing about us without us’

Thinking Autism makes the frankly disgusting allegation that our Manifesto ‘attempt[s] to silence those whose disability precludes their participation and those (both people with autism and the families of people with autism) who disagree with certain tenets of the neurodiversity movement’.

 Firstly, we have made every effort to enable people to contribute to our Manifesto in whatever way is most appropriate to them. We welcomed submissions to our Manifesto consultation from everyone, and gave serious consideration to everything that was submitted. We received submissions from neurodivergent people with various levels of disability or impairment, and in various formats. We also received submissions from parents, carers and organisations. We did not, and do not, attempt to silence anyone.

Obviously, not every autistic person in the UK contributed to the Manifesto, some because their level of disability or impairment precluded them from doing so. However, that is not a sufficient reason for us to not produce a Manifesto based on the submissions of those who could and did. Does Thinking Autism criticise every organisation’s manifesto for not including contributions from people who were unable to contribute to it? Or does it reserve this criticism solely for a manifesto put together by neurodivergent people?

When TA states that ‘In this manifesto, there are demands being made by people who would take away the rights of others, denying them the right to a cure and the right to have the correlation between their medical illnesses and autism recognised’, this is a straightforward lie. Firstly, the right to something that does not exist is a nonsense; and secondly, our Manifesto specifically addresses the issue of co-occurring medical conditions.

TA complains that our manifesto does not represent views that disagree with it. What manifesto does?! A manifesto is not a survey of views or a panel debate: it is a set of policies. We do not demand representation of ourselves or our views in the Conservative Party’s manifesto, or in Thinking Autism’s publications. We are confident that most people understand that a manifesto is a statement of one group’s beliefs and that therefore, attacking it for not including contrary beliefs is absurd.

TA also makes the groundless claim that we exclude non-autistic parents from having ‘a say in the health and well-being, and the future lives of their own children’. Nothing in our Manifesto suggests anything of the sort. On the contrary, it includes plenty of policies that are of great benefit to parents and which many parents have welcomed.

We would also draw readers’ attention to the fact that the group which put together our Manifesto included parents of autistic and other neurodivergent children, including children with co-occurring learning disabilities and other conditions, and including children with very high care needs. It is deeply insulting to those parents and children to suggest, as TA does, that they do not consider the needs of autistic people who are significantly disabled.

It is instructive that these wild allegations have been prompted by our application of the principle of ‘nothing about us without us’. This principle has been a core slogan of the disabled people’s movement for decades, and sadly, TA’s approach shows exactly why it is still needed. For Thinking Autism, the suggestion that autistic people might wish to be involved in policy-making about our own lives prompts a horror-struck reaction that we must be trying to silence others. Perhaps TA would prefer us to go home, shut up and let others speak for us?

A few points about drafting

Thinking Autism alleges that our manifesto’s five key principles are each ‘lacking in nuance’. This section of our Manifesto is a brief, concise summary of the basic principles we applied. In a concise summary, there is not going to be a great deal of nuance. But as we have shown, it is actually TA’s reading which lacks nuance.

It also alleges that our Manifesto contains ‘opinions presented as facts’. It does not. The examples that TA provides to back this allegation this are from the short section ‘Our Principles’. Clearly, the very fact that they are in this section clearly labels them as being our principles, our opinions, not assertions of uncontested fact. In fact, it is TA’s article which is characterised by ‘opinions presented as facts’. One example is its assertion of an ‘unassailable fact that autism is a disability’. Not even the law supports this assertion, and whether you agree with it or not, it is plainly a contested opinion, not a fact, unassailable or otherwise.

TA follows this ludicrous claim by accusing us of bullying people simply by expressing our opinions. This is a disgraceful slur on the many autistic and other neurodivergent people involved in and supporting this Manifesto. Evidently, this ‘charity’ finds autistic people expressing our opinions objectionable, which suggests a contemptuous and fearful view of autistic people.

TA repeatedly accuses us of trying to force our views onto others. This is another ludicrous slur. Like any other manifesto, this document presents our policies. People are free to agree or disagree with them. If us producing a manifesto represents forcing our views onto others, then what does TA publishing this dogmatic and accusatory article represent?!

Thinking Autism purposely uses the term ‘people with autism’, in order to separate autism from autistic people. We, and the big majority of autistic adults, prefer ‘autistic people’.

Conclusion

Thinking Autism’s hit-piece against the Labour Party Autism / Neurodiversity Manifesto illustrates the reason why such a manifesto is urgently required.

The article discusses autistic people as damaged, diseased, broken people in need of fixing. It portrays us as people incapable of articulating our views and as not entitled to raise demands. It relies on ‘evidence’ that lacks credibility to attack scientific consensus.

It employs various rhetorical techniques to make ludicrous allegations, including many of which it is itself guilty.

And it does all this in order to justify its pursuit of the medical suppression of autism.

It is pathologising, patronising and inaccurate.

We urge readers not to be taken in by its rhetoric, and instead to read our Manifesto and see it for what it is: a set of transformative policies well worth fighting for.

You can read the Labour Party Autism Neurodiversity Manifesto via this link: https://neurodiversitymanifesto.com/2018/09/18/labour-party-autism-neurodiversity-manifesto-final-draft-version-2018/