What is wrong with The Labour Party’s “Autism Neurodiversity Manifesto” and autism identity politics?

Mar 29, 2019 | reThinking Autism blog

“Tyranny is the deliberate removal of nuance.” Alfred Maysles

Recently in the UK, a “Neurodiversity Manifesto” has been shared by the Labour Party with this avowed motivation: “The whole world is neurodiverse…We are launching an inclusive manifesto for all.” This project is being carried out by the Labour Party Autism/Neurodiversity Manifesto Steering Group and is supported by Shadow Chancellor of the Exchequer, John McDonnell.

The manifesto has five key principles, each of them lacking in nuance, unreflective of the lived experiences of many people in the autism community, and ignoring research data.

Thinking Autism, a charity that represents hundreds of UK families and individuals who are living with autism, has important objections to the opinions presented as facts informing the intentions of this manifesto. Some of our member families also experience other diagnoses which are labelled as neurodivergence in this manifesto (ADHD for example) but this response will focus on autism.

The manifesto has five key principles, each of them lacking in nuance, unreflective of the lived experiences of many people in the autism community, and ignoring research data.

The problem with the ‘social model of disability’

Taken from the manifesto: “The social model of disability: Disability is caused by society creating barriers to the equal participation of impaired (or neurologically different) people.”

The presumption that disability is caused by societal barriers to equal participation does not reflect reality, which is more nuanced and complex. Our society most certainly has a long history—continuing to this very moment—of discrimination against, marginalisation and appalling treatment of people with disabilities. However, asserting that disability stems only from societally-created barriers overlooks two important facts.

The first fact is that our current society has done a great deal to remove many barriers. In fact, persons with disabilities are provided with more support and accommodations than ever before, meaning that barriers are fewer than they once were. This fact does not mean that there isn’t much more to be done. Of course there is. However, that work should not be done within the context of the false assumption that it is the only work necessary. That assumption is based on prejudice, not the lived experiences of thousands of people or the research data, both of which point to the the second overlooked fact.

The medical model of disability as part of the discussion

Altering discriminatory practices or incorporating more accommodations in workplaces, school and other institutions will undoubtedly help many people with disability. Such interventions, however, cannot address the second important fact ignored in the manifesto: the disability which is grounded in physical illness.

In addition to behavioural symptoms, 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.

Mortality is significantly increased in autism, especially for people with more severe symptoms of the disorder. The severity of medical issues and sensory and motor dysfunction is strongly associated with severity of autism symptoms and maladaptive behaviours (1, 2, 3, also see What is Autism).

In other words, those people with autism who require the most support, who face the greatest barriers, are also far more likely to be seriously ill. The medical condition is by far the most significant barrier to equal participation, to quality of life and to the very survival of those most severely affected.

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.

While it is sometimes assumed that poor health and high mortality in autism might be due to poor medical care received by individuals with autism throughout life, the evidence strongly points towards poor health being intrinsically linked to the emergence of autism, in early life. It has even been shown that early childhood physical health issues can be used to differentiate babies and toddlers who are at high risk of developing autism. On the basis of such findings, scientists now recommend approaching autism as a chronic health condition.

Of course, addressing genuine socially constructed barriers that prevent equal opportunity for all is necessary, laudable, and activism in which our charity engages. However, 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. This dismissal, whether done out of ignorance or, as in the manifesto, intention, is very obviously a socially constructed barrier to fair treatment.

Any reasonable discussion about improving the quality of life for persons with disability must take into account physical heath and ability, and not simply attribute the source of the disability solely to society.

While research has shown differences in what some refer to as “wiring”…the assumption that these issues explain all facets of autism is baseless. Equally baseless is the assumption that under- and over-connectivity are static conditions and unamenable to treatment.

Neurological differences and ‘different brain wiring’

Taken from the manifesto: “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.”

The neurodiversity movement and this particular manifesto frame autism as neurodivergence, simply differently-wired brains. While research has shown differences in what some refer to as “wiring” (a term with misleading connotations) and that people with autism have both neurological under-connectivity and over-connectivity, the assumption that these issues explain all facets of autism is baseless.

Equally baseless is the assumption that under- and over-connectivity are static conditions, unamenable to treatment and present from birth.

Framing autism as only a reflection of humanity’s diversity—especially when diversity is an incontrovertible fact of being human—discriminates against those people whose severity of autism is correlated with complex and serious disadvantages. It is a fact that the autism spectrum is wide; however, understanding autism as only divergence, only “different wiring” that one is born with leads to the demand that any discussion around the possibility of a cure be removed from the conversation.

It is difficult to think of a more suppressive, non-accepting and discriminatory action than removing the option of a cure for people who would choose it for themselves.

To cure means simply to provide relief from symptoms. The suggestion of the manifesto is that cure is somehow equal to a far more sinister desire to suppress human beings, restricting their already legally entrenched right to be unique.

It is difficult to think of a more suppressive, non-accepting and discriminatory action than removing the option of a cure for people who would choose it for themselves.

If one is diagnosed with autism, it is considered a disability. Framing disability as being solely the result of societal discrimination and lack of accommodation, or framing it as simply difference, are both disingenuous assertions contradicted by scientific research and by the lived experiences.

There is robust research revealing the medical comorbidities common in autism. Furthermore, there is research that shows when appropriate investigation and treatment of these comorbidities is undertaken, debilitating symptoms of autism can be ameliorated, and even disappear entirely.

Reflecting the research, the lived experience of people from all over the world, is that autism diagnosis can be correlated to medical diagnoses and effective treatments that are individual-specific and grounded in precision medicine can reduce and even eliminate the symptoms that constitute a diagnosis of autism.

By assuming the authority of identity politics and creating an image of oneself, or another person, based solely on their neurological (dys)function, the next logical step is contorting that image further to claim that this ‘autistic personal identity’ grants the authority to enforce one’s personal beliefs about autism onto others, and to dictate their desires and actions.

Bullying and hate crime against people with autism – identity politics and the right to choose for ‘your’ autism

Taken from the manifesto: “There is a level of bullying and hate crime against people with ADHD and other neurodivergent conditions that should shame our society.” Based on the lived experience of our members, and on the views expressed by many individuals with autism, our charity agrees.

Nevertheless, it is an egregious form of bullying to use personal viewpoints as fact and individual choices as science, in order to eliminate another individual’s option to choose amelioration of a disabling condition. Often this type of bullying takes a more personal form, where parents of children with ASD and autistic adults who endorse the right to seek treatments are accused of hating their children or themselves or called names such as ‘martyr mums’, ‘ableists’ and ‘curebies’.

By assuming the authority of identity politics and creating an image of oneself, or another person, based solely on their neurological (dys)function, the next logical step is contorting that image further to claim that this ‘autistic personal identity’ grants the authority to enforce one’s personal beliefs about autism onto others, and to dictate their desires and actions.

Attempts to align autism with inherent human qualities such as sexuality or race—constructs which seem to give licence to much of the name-calling and bullying—are in direct opposition to the unassailable fact that autism is a disability, variable in severity of presentation, but with impairment in daily functioning being a prerequisite of diagnosis.

Opposition to austerity and cuts to public services – Funding to reflect reality

Taken from the manifesto: “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.”

Our charity works to provide support to the most vulnerable in our society. Far too often, austerity measures target that same group of vulnerable people, which is clearly a political choice. However, the fact remains that there are ever increasing numbers of people with autism with no indication that these rate increases will plateau.

It has to be acknowledged that even under a best-case scenario of government policy that will consistently prioritise supports for disability, economic necessity will inevitably play a role.

Autism and autism-related behaviours have a profound impact on the lives of carers and family members. Societal and  economic burden of autism is debilitating and exceeds the economic burden of cancer, stroke, and heart disease combined. A 2014 study by the London School of Economics estimated that autism costs the UK at least £32 billion per year

Research shows that people who once had autism can recover from it. There is also evidence that people who once did not have autism can regress into autism. These facts should not be dismissed because they don’t accord with the neurodiversity paradigm.

Economic decisions about the best ways to support people with autism have to be made in a context of what the research shows: increasing prevalence with no sign of plateauing and growing research that shows that appropriate treatment of medical comorbidities common in ASD can significantly and positively impact quality of life, function and support needs for not only the person with autism but also carers.

Research shows that people who once had autism can recover from it. There is also evidence that people who once did not have autism can regress into autism. These facts should not be dismissed because they don’t accord with the neurodiversity paradigm. Money should be spent on these facts and the research that investigates them not only for the sake of individuals and those who care for them, but for the economic sense it makes to reduce costly, often lifetime supports.

Is autism for life? False assumptions versus scientific evidence

When it comes to investigations into ameliorating the economic requirements of autism and possible treatments for the disability, statements such as the following, taken from the manifesto, are an effort to engage in straw man fallacy: “Profiteers and ‘quacks’ exploit the fears of neurodivergent people and our families by marketing false and dangerous ‘treatments’ and ‘cures’.”

Of course, as in any part of society, there will be unscrupulous people looking only to profit in some way from autism. However, by lumping together profiteers and quacks with treatments and cures, the assertion overlooks the fact that hundreds of qualified researchers and clinicians have published hundreds of articles, spoken at hundreds of conferences, and worked with thousands of individuals with autism in pursuit of understanding the aetiology of autism as well as researching treatments and cures that would reflect that growing understanding.

Cure for autism need not be placed in quotation marks. Published research articles and the lived experience of hundreds of families show that recovery from autism and/or significant reduction in severity of autism are possible and do take place. These phenomena are consistently disregarded, and far too much emphasis is placed on the scientifically unsupported position that autism must be lifelong.

There are also ungrounded assertions that if the causes are genetic, or where autism is present at birth, researchers should not investigate treatments for underlying causes in order improve the functioning and reduce the disabling symptoms of autism. This is an absurd argument in the light of the fact that scientists and clinicians are actively treating, or researching and developing future cures for many congenital and genetic disorders, including those with a high prevalence of autism that were mentioned above.

Before giving blanket agreement to the stance of “Nothing about us without us” it must be carefully examined who “us” is.

Removing the personal choice to cure and treatments – The ultimate discrimination & denial of human rights

A Change.org petition in the UK, one that is closely associated with people who have written the manifesto, calls to “Make autistic cures illegal in the UK” and asserts as fact that it is a “false idea that autism is something that can be or needs to be cured.” It goes on to assert that “Autism is a neurological condition, it’s not something you can cure like an injury or illness.”

Enlisting the help of the public to outlaw cures for autism is blatantly discriminatory against people with disability who would choose such cures.

Trying to outlaw a cure—and it bears repeating yet again that the word simply means to heal, to make well, to restore to good health—is tantamount to making personal choice, wellness and good health illegal for people with autism who would desire those human rights. If someone chooses no treatment, no intervention, that is their right; however, that right does not extend to making the decision for others.

The statement that autism is not something that one “can cure like an injury or illness” is patently false in that there is research and lived experience showing that people are cured or recovered from autism, or have had their symptoms of autism reduced to such a such a large degree that their level of disability and support needs have been significantly reduced. In our charity family, there are people who have lost their diagnosis of autism; that is, they no longer have any symptoms that are grounds for an autism diagnosis.

The rights we already have – the Universal Declaration of Human Rights against discrimination

Taken from the manifesto: “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.”

Of course, discrimination against people is unacceptable. Article 22 of the Universal Declaration of Human Rights states: “Everyone, as a member of society, has the right to social security and is entitled to realization, through national effort and international cooperation and in accordance with the organization and resources of each State, of the economic, social and cultural rights indispensable for his dignity and the free development of his personality.”

Challenges to the social roots of discrimination do not entitle anyone to diminish or ignore the medical grounds for disability, nor should these challenges remove choice from persons with disability. If people choose to view autism as inseparable from their personality and not pursue any form of intervention or treatment, that is their right. However, it is the right of others to make different choices for themselves and, as Article 25 of the Universal Declaration of Human Rights states, “Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including … medical care…”

“Nothing about us without us” – but who represents the ‘us’, and who gets to decide?

Taken from the manifesto: “Nothing about us without us: Policies and services, and the Manifesto itself, must be shaped by neurodivergent people themselves.”

The exclusion of people with disabilities from choices about their own lives is unacceptable. At the same time, however, manifestos such as this one and loud voices within the neurodiversity community attempt 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.

Before giving blanket agreement to the stance of “Nothing about us without us” it must be carefully examined who “us” is.

If an adult with autism doesn’t perceive that autism as integral to themselves, does that mean they must be excluded from the development of a political framework that could potentially have broad ramifications for their future health and wellbeing?

The large majority of our charity members are the parents or carers of people with autism; however, we have always had members who are adults with autism. Many of these people are unwilling to be public in their views for fear of reprisal. People with autism who welcome a cure or are critical of aspects of the neurodiversity movement are often called self-haters, ableists, curebies and worse.

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. None of this can be considered inclusive.

Furthermore, these demands patently refuse to acknowledge that there are autistic adults who clearly do not endorse these demands and who are not aligned with the neurodiversity movement or some of the theories upon which it rests. Are they not part of the ‘us’? If an adult with autism doesn’t perceive that autism as integral to themselves, does that mean they must be excluded from the development of a political framework that could potentially have broad ramifications for their future health and wellbeing?

Does a narrow definition of ‘us’ mean that non-autistic parents do not have a say in the health and well-being, and the future lives of their own children? Does it mean that these non-autistic parents must defer to people who have never even met their children? Does it mean that severely autistic individual whose cognitive impairments precludes their involvement in such debate be without a voice from people who know them best? Does that seem fair when these people, with the most significant healthcare and support needs, should be at the heart of the autism agenda?

What is inclusion? Excluding the rights and experiences of ‘others’

If inclusion is indeed the goal, how can the rights and experiences of people be trampled on? Some people with autism are attempting to speak on behalf of the entire autism community, not through a thoughtful process of dialogue and finding common ground, not by examining the research, but by issuing demands and sweeping generalisations, and name-calling those who disagree with them.

The word ‘manifesto is derived from the Latin word ‘manifestum’ meaning ‘clear’ or ‘obvious’. It would seem obvious that if the rights and quality of life for people with autism are to be strengthened, that cannot happen by ignoring the experiences of thousands of people including parents of severely affected children very often unable to communicate and autistic adults with a legitimate desire for a cure, ignoring the research that is growing almost daily, and pretending that within the vast spectrum of an autism diagnosis, one person’s experience will conform to another’s. That is called exclusion.

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