February 17, 2022 | 12 minutes read | Tags:

The "Tragedy" of Autism - Spectrum 10k

We call for the immediate termination of Spectrum 10K and any similar studies, and for "research into autism" to instead focus on the material ways that racial capitalism continues to harm and draw profit from autistic people.

The "Tragedy" of Autism - Spectrum 10k
“Disabled people know that the quality-of-life judgements made about us by non-disabled people can prove not only inaccurate but deadly.”

- Marta Russel, “Eugenics and the “Sole Possible Economic Order”

Our position

Red Fightback believes that the Spectrum 10K study, like any other biological or medical reduction of disability, serves only to classify, exploit, and repress disabled people.  As such, it stands within a long history of eugenic policy by the British state and the study's backers.  We call for the immediate termination of Spectrum 10K and any similar studies, and for "research into autism" to instead focus on the material ways that racial capitalism continues to harm and draw profit from autistic people.

Introduction

Spectrum 10K is a study recently launched by the University of Cambridge, the University of California Los Angeles, and the Wellcome Sanger Institute.  In its own words, it is the “largest study of autism in the UK and is a research study involving 10,000 autistic individuals of all ages and abilities”.  The specific form of this involvement includes data collected from DNA samples and questionnaires, and the proposed aim of the study is to “understand the biological and environmental factors that lead to autism”, according to a document submitted to a research ethics board.

Red Fightback believes that such a focus on and reduction to the biological and environmental roots of autism obscure the study of the actual social apparatus that assaults neuro-divergent and disabled people as part of the maintenance and reproduction of racial capitalism.  Furthermore, Red Fightback believes that the data collected in Spectrum 10K will be used to further a eugenicist agenda, despite claims to the contrary, in line with the historical behaviour of the study's backers.  As such we call for action to prevent this study and future studies of this type from taking place.  In the remainder of this article we detail why this is our position.

Present-day oppression of disabled people in Britain

In Britain, the daily lives of disabled and neurodivergent people are subject to an ever-increasing onslaught of violence, and the emergence of projects like Spectrum 10K are not unique. This is very much business as usual under racial capitalism. During the COVID-19 pandemic, the government waged a successful eugenics campaign against the disabled and elderly, killing 39,000 care home residents between April 2020 and March 31 2021, and ensuring that disabled people made up 59% of all COVID-19 deaths, between March 2 to July 14, 2020. The expendability of “unprofitable” and “dependent” disabled lives has been stressed by racial capitalism’s efforts during the pandemic; placing blanket do-not-resuscitate orders on the elderly and those with neurological or learning disabilities, discharging COVID-19 patients into care homes without the requirement for a negative test, and suspending the Care Act, allowing councils to halt care plans.

This is part of a long-term onslaught against disabled people’s very existence - with austerity came cuts to social care and vital benefits, and the rise of ‘scrounger’ rhetoric to justify brutal and often deadly measures. 130,000 deaths since 2012 were reported to be the result of austerity in 2019. Disabled people are also twice as likely to be living in food poverty.

The roots in racial capitalism

This oppression of disabled people is not a historical accident, nor is it the project of a few bad actors.  Instead it takes root in the economic structure that is modern racial capitalism.  This structure depends on the presence of commodity-form wage-labourers, workers who are hired as interchangeable fungible parts of the productive process.  As such the reproduction of this system requires a means of classifying people according to their conformance with the desired wage-labourer, and repressing or eradicating those who cannot.

In the contemporary British social formation part of this apparatus involves the classification of people into categories of disability and neurodivergence, from which they are either "repaired" into conformity with the standard worker, or repressed out of normal social activity as a deterrent and punishment. So, this is the world we live in. One where the neurodivergent and disabled are simultaneously seen as too infirm to be granted autonomy and also a problem to be tackled with violence.

From this it is clear that the oppression of disabled people will co-involve other state apparatuses designed to reproduce the current relations making up society.  The treatment of disabled women will inherently involve the sexist ideology used to reproduce the role of women within the family structure: this can be seen immediately in the different social treatment of autistic women.  Similarly the category of disability applied to Black people incorporates the colonial apparatus and the libidinal economy of enslavement.  From this it is also clear that we cannot look to politicians to “fix” a system reliant on our oppression for its existence, and that they will always be looking the other way

What is Spectrum 10K?

In evaluating any scientific studies into autism or disability we must begin our thinking from the points above. Does the study aim to alleviate the oppression of disabled people, or to change the social formations of racial capitalism that require the oppression of disabled people to function? Is such a thing even possible with the data the study creates, or is it at best an academic curiosity and at worst a tool for repression?

It is clear that any study into the biological and environmental roots of neurodivergence and disability can say nothing about the social treatment of neurodivergent and disabled people: if a single DNA base-pair was tomorrow identified that causes autism, the lives and social position of people with autism is in no way affected.  This is obvious, because the treatment of autistic people does not occur because of this-or-that genetic structure but because of their position compared to that of the “normal”, abled worker, idealised by racial capitalism. However, in the longer term, such studies can and historically have been used to further the oppression of disabled people, by making their identification easier and by making pre-selective eugenic campaigns possible.

Autsitic people are well aware of how science and medicine has historically seen and treated us. We know that scientific research will inevitably be weaponized against us for profit, in order to minimize our continued “cost” or “drain” upon the capitalist state. One can imagine any number of complicated biological interventions made possible with “autism genes'', but here’s a simple one. Prenatal screenings could present the option for terminating a pregnancy on the basis of finding genes linked to autism. Similarly, two people wishing to conceive a child, may be able to undergo a carrier screening, where they themselves are screened for genes linked to autism. Depending on those findings, they may wish to take "precautions'' to prevent the conception of an autistic child. In this particular hypothetical, the doctor’s role must be emphasised, as it is this authority which reproduces hegemonic conceptions of autism, and the supposed misery inherent to being neurodivergent.

Some will say that this is unfair, that science is a field of unrestricted enquiry, and that scientists formulate questions based only on their innate curiosity and innocently collect data to answer these questions. But this is not true. The questions scientists study are influenced by the ideological currents of their time, and the histories of their scientific fields as well. The field of medicine has historically been used to give weight and credibility to white supremacy and eugenics. The origin of eugenics in Social Darwinism, seeking to protect the perfect human and eradicate the racialised disabled subhuman, remains as influential today as it was throughout the 19th and 20th century.

Spectrum 10K is a study that tries to understand the causes of autism, including its genetic roots. Although Spectrum 10K now claims to hold a firm stance against “finding a cure to autism”, following pushback from autistic rights activists, we will not be taking their word for it. For one reason, as outlined above, such information is entirely orthogonal to the material social basis of the oppression of people with autism.  For another reason, the groups and researchers backing the study have a history of eugenic and anti-disabled work.

The “tragedy” of autism

A leader in autism research for over two decades, and now taking the helm as Principal Investigator of Spectrum 10k, the recently knighted Simon Baron-Cohen has excelled at proliferating misinformation about autistic people. One of Baron-Cohen’s popular theories is of the “extreme male brain”, which posits a dichotomy between the “empathising female brain” and the “systemising male brain”, claiming that autistic people have an extreme version of the systemising male brain. Baron-Cohen and Sally Wheelwright’s conception of The Empathy Quotient (EQ), a means to measure empathy levels and uphold the false view that autistic people do not feel empathy, relies on the same bio-essentialism that makes assertions about the “male” and “female” brain. We won’t be investigating either of these damaging contributions by Baron-Cohen in depth here, but it is important to highlight the breadth and influence of his work on autism, and why the dangers of Spectrum 10K must not be overlooked.

At the heart of Baron-Cohen’s work is an emphasis on the tragedy of autistic children, in his words, “It is a tragedy for their families who work tirelessly to attempt to engage with and socialize their child, mostly with very limited results.” This sentiment is emblematic of research into autism and the positions widely held by the public; asserted by academics, families suffer a tragedy if they have autistic children, it is children who have autism (autistic adults rarely enter the conversation), and inherent to autism is a destined place “on the periphery of any social group”.

The “tragedy of autism” also extends to the social and political sphere, according to Baron-Cohen. He claims that autism costs the English government £32 billion a year. This number seems to have been arrived at by taking cost estimates from 16 autistic children in the United States of Absolutely-ridiculous-medical-costs (USA), generalising to the entire population, and ignoring the amount of money earned by autistic people, as detailed in this twitter thread.

Following the Streams of Genetic Data

The other principal investigator in this study is Daniel Geschwind, who has spent a large part of his career looking for the genetic basis of autism. He is particularly known for founding the Autism Genetic Resource Exchange (AGRE), a gene bank of more than 4,500 genetic samples of autistic people and their family members. And also for founding the program “Cure Autism Now.” (i.e. Do the Thing that Spectrum 10K Claims Is Not an Aim) So, it is safe to say that he and Baron-Cohen align in their views on autism as a tragedy that needs fixing.

Let’s take a look at Geschwind’s gene bank of autistic peoples’ data. Any researcher can apply for access to this data, researchers whose agendas may not be disclosed to the public --- collecting genetic samples from patients automatically invites a critical eye, but just picking up data from a repository doesn’t have the same effect. So, here’s a question: will the data collected by Spectrum 10K also be added to this bank? The Spectrum 10K website clearly states that they may share the data with other researchers (presumably including the AGRE) and commercial ventures, so we don’t know who will get their hands on it.

The plan is to club this data with 90k other samples’ data, and… now we have to keep track of the sharing practices of the original spectrum 10k team as well as the other team managing this bigger database. And perhaps there will be even more layers of abstraction and re-mixing between data collection and data usage, who knows!

Who’s going to keep track of all these layers? What are the criteria based on which research teams’ requests for access to the data will be accepted or rejected? Is this stated clearly? Suppose you give them your genetic data (and access to your entire medical history, they’re also asking for that!) and now you’re concerned about these issues. Whom do you contact? Surely there is some process by which you can contact an independent expert and they will convey your concerns to the research team and perhaps have some powers to stop potential misbehaviour? “To protect [independent reviewers’] time, we have requested participants to contact the study team first should they wish to get in touch with an independent reviewer.” This is what they told the Scottish ethics board, after the ethics board recommended that the independent reviewers’ information should be given to all participants. The ethics board insisted, and it still isn’t on the information sheets provided to the subjects. So, at the very least, this team is acting very fishy.

The Wellcome Sanger Institute and neo-colonialism in Africa

Alongside the University of Cambridge and the University of California Los Angeles, Spectrum 10K is also led by the Wellcome Sanger Institute, “a world leader in genome research”, and eugenics aficionados. In order to better understand Wellcome Sanger, we will look at their ‘African Genome Variation Project’, a stark example of white supremacy guiding and giving credibility to genome research. The stated aim of the project was to “understand how African genome structure differs from that in Europe in order to enable studies into the genetic basis of disease in Africa '', and aimed to study the genomes of up to 100,000 Africans across sub-Saharan Africa.

Seeking to identify a predisposition to genetic diseases in Black African populations purposefully obscures the role of Western colonialism and neo-colonialism in creating and preserving the conditions for such diseases (such as poor infrastructure, lack of access to clean water, waste-dumping, privatised education, and food scarcity). The root of disability and disease in Black Africans is not a genetic proneness, but a result of the historic and present-day exploitation of the continent by Western imperialism; a quick look at global COVID-19 vaccination coverage -- 75% of doses administered in just 10 countries, and 2% in Africa -- makes this relationship clear. Indeed, any findings from such research would invariably be a profitable endeavour for Western pharmaceutical companies who have had their claws firmly around the continent's throat for decades. Sub-Saharan Africa imports 70-90% of its pharmaceutical products, a similar number to the rest of the continent. Intellectual property laws play an important role in underdeveloping Africa; in 2001, over forty of the largest international pharmaceutical companies took the South African government to court to stop it from importing cheaper generic HIV/AIDS drugs.

In 2018, whistleblowers on the ‘African Genome Variation Project’ revealed that the Wellcome Sanger Institute had commercialised a gene chip without legal agreement or consent from the thousands of Africans whose DNA had been used to develop the chip. Cheaper than sequencing entire genomes, developing a gene chip, or a microarray, allows researchers to “look at key spots in a person's genome where variation might be expected” and detect the expression of thousands of genes at the same time. Thermo Fisher Scientific developed 75,000 microarrays from sequencing the genomes of 2100 Ugandans, and 400 other people, through partnerships with institutions throughout Africa.

Concerns were soon raised that the chips were developed without the necessary legal arrangements and consent; some of the material transfer agreements (MTAs) that Sanger had signed with African universities and institutes did not allow for commercialisation of the data collected. But in December 2017, eager to move ahead with the purchase of the arrays before Thermo Fisher’s price guarantee expired, the commercial launch of the gene chips was announced, and Wellcome Sanger went ahead with their order without permission from all its partners. March 2019, Stellenbosch University demanded Sanger return about 100 samples donated by the Nama people, as its MTA did not permit commercialization. Concerns were also expressed by The University of KwaZulu-Natal in South Africa, which had gathered DNA from 100 people of Zulu descent.

This is part of a long history of Black people’s bodies being used for medical research without consent or compensation. Months before Henrietta Lacks died of cervical cancer in 1951, doctors took samples of her cancerous cells, and sent them to researchers without Lacks’ consent or knowledge. Henrietta’s cells were shared widely, and are today regarded as some of the most important in medical research, and yet her family was never compensated, nor even told about their use until 1975. The cells were not only used for medical research, but for commercial gain - profiting from her body after her death. There is still no law requiring consent for cells used in medical research, although Lacks' family continue to campaign for a change.

Studies like the African Genome Variation Project and Spectrum 10K pose a significant risk to Black and autistic people because they exist to use, discard, and profit from the lives they collect data on. To Simon Baron-Cohen, Geschwind, the Wellcome Sanger Institute, or the 40+ pharmaceutical companies that took South Africa to court over affordable HIV/AIDS medicine, Black disabled people are essentially subhuman, and exist either as disposable labour under racial capitalism, or profitable DNA under a microscope.

What is to be done?

Spectrum 10K’s response to activists who raised concerns has strengthened this feeling of suspicion. They only paused the study after sustained opposition, and that too because of anxious funders. When around 20 people, organised by Autistic Inclusive Meets (AIM), gathered at Simon Baron-Cohen’s place of work, an NHS-funded treatment clinic in the University of Cambridge, one damp little Friday afternoon in October, for a protest and discussion of these points, they were greeted by the sight of a gate locked with a brand new metal chain. The entire clinic, where people go to get treatment, and which is clearly not locked regularly (as the fresh-from-the-factory gleam of the chain attested), was locked up for the better half of a working day because roughly 20 autistic people were gathering to ask questions. Members of RFB were part of the group, and we can confirm that the deadliest weapons in anyone’s possession was a rather cumbersome plastic tub full of water bottles, and a stuffed octopus.

a photo of the chained shut gate, covered in various protest signs. some read: "say no to eugenics", "nothing about us without us", "three million pounds to study spit? CAMHS in crisis!". "embrace don't erase", "SBC don't speak for me!" and "boycott spectrum 10K"

Spectrum 10K is currently paused whilst preparations for a consultation are underway. This three-phase plan to co-design and implement a consultation with the input of autistic people exists as the type of development which would strike many as promising, but only intends to divert attention from the issues at the core of this project. As we have detailed, Spectrum 10K is the continuation of a eugenics tradition, a racist and ableist project refined and practiced by the capitalist state of past and present. Simon Baron-Cohen and company have a rich history entrenched in anti-autistic, anti-disabled, and anti-Black practices, and no consultation is going to shift how profitable that industry of hate is. Therefore we stand as firmly against consultations as we do the project in its entirety.

It is clear that the leaders of Spectrum 10K will cower under pressure. We must be loud, informed, and willing to apply that pressure not just on Spectrum 10K, but each new campaign that declares war on Black, disabled, and other oppressed communities in the UK.