CW: Ableism, description of electroshock therapy, eugenics, genocide, physical violence, sexism.
Up to 450 volts of electricity courses through the body during electroconvulsive ‘therapy’ (ECT) sessions. The procedure works by passing an electric current through the brain, triggering multiple seizures that alter brain activity, supposedly relieving a plethora of traits associated with various mental health issues. A ruling by a federal appeals court in Washington DC overturned the Food and Drug Administration’s ban on the use of electric shock therapy on people with mental health issues, after a legal battle focused on its use on autistic individuals at a Massachusetts residential school. This points to a fundamental problem in our discourse around autism and disability more widely; we should be attempting to understand and support autistic people, not to cure them.
The Judge Rotenberg Centre in Canton Massachusetts was thrust into the global spotlight after winning a legal challenge enabling it to continue its use of electric shock devices on patients with mental health issues and disabilities, a number of whom are autistic. ECT was first used on humans in the late 1930s when Italian scientist Ugo Cerletti witnessed its use on pigs at a slaughterhouse in Rome. Cerletti and one of his colleagues, Luco Bini, carried out the procedure on a man found wandering the city, subjecting him to 110 volts which caused a seizure. Over the course of the treatment, his muscles spasmed, his skin was singed and the patient repeatedly struggled for breath. Yet at the end of the session, it was declared that it had been a success and that electroshock therapy was safe for human use.
The Judge Rotenberg Centre – renamed after county judge, Ernest Rotenberg, who stopped an attempt by Massachusetts state authorities to ban ‘aversives’ (physical punishments used for behaviour correction including smacking, pinching, and ammonia exposure) after the death of a 22 year old autistic man at one of the centre’s homes – has been the focus of much hurt and anger from the autistic community. Aside from the disturbingly brutal nature of shock therapy, much anger has focused on the attempts themselves to ‘cure’ autism. Autism is not an illness; it is a part of an individual and their identity that cannot be removed.
Efforts to cure and treat autism are not limited to ECT and the Judge Rotenberg Centre. The Spectrum 10K study has raised questions of how we discuss and understand autism here in the UK. The study, by researchers at Cambridge University, University of California Los Angeles (UCLA), and the Autism Research Centre, amongst others, has asked for 10,000 autistic individuals to send in their DNA for research. Its stated aims are to “investigate the genetic and environmental factors that contribute to autism and related physical and mental health conditions to better understand wellbeing in autistic people and their families”. But the nature of the study’s focuses have raised serious concerns.
Efforts to study the genetic causes of autism generate understandable anxiety that the study might be seeking to ‘cure’ or decrease the prominence of autism. Indeed, whilst Spectrum 10K organisers insist they are not attempting to find a cure for autism, a number of those who are either part of or affiliated with the study have also partaken in projects that would suggest otherwise. Daniel Geschwind, co-principal investigator, has affiliations with an organisation called Cure Autism Now (now part of Autism Speaks), a fairly self-explanatory organisation that focused on research into and treatments for autism. Professor Simon Baron-Cohen, director of Cambridge’s Autism Research Centre and project leader has also stated that there was “no way we can ever say that a future political leader or scientist won’t use the research for eugenics”.
Attempting to eradicate or decrease the prevalence of certain characteristics through genetics, as organisations searching for ‘cures’ and preventative measures for autism do, is eugenics. The eugenicist movement, which first rose to prominence in the UK in the 19th century before spreading across the world, is associated with many of the horrors committed by fascist regimes. The early 20th century saw many governments attempt to ‘phase out’ certain characteristics, including disability and particular ethnicities and sexual orientations, through forced sterilisation, controlled ‘breeding’ programmes and genocide. Cloaking attempts to use genetics to phase out autism in the language of potentially developing ‘pregnancy screenings’ and ‘supporting autistic people’ do not make their true intentions any less terrifying and alarming. Baron-Cohen admitting the possibility of misuse of data has quite appropriately shocked many in the autistic community, who fear future attempts to prevent autism or eradicate it entirely.
Baron-Cohen has also himself been widely criticised by the autistic community. A 2009 BBC article written by him propagates many of the harmful stereotypes around autism. Baron-Cohen writes of the link between “males, maths and autism”, asserting that “people with autism are much more likely to be male” and tying their “male brains” to exceptional mathematical ability. The truth is that whilst the majority of those diagnosed with autism may well be males, autism is not a gendered ‘condition’ and a key reason why autistic men and boys outnumber autistic women, girls, gender non-conforming, and gender diverse people, is that diagnostic criteria remains heavily coded in stereotypical language and assumptions of gender. The trope of autistic people being cold, unfeeling mathematicians and STEM geniuses is equally harmful: autistic people can be creative, we can be empathetic, and we can be talented outside of these fields. Autistic people can also be academically average; the ‘autistic people are superheroes’ narrative would not let you believe it, but autistic people may be academically unexceptional. That is fine too. Baron Cohen cautions that pregnancy screenings or treatments for autism may risk reducing “the number of future great mathematicians”, but in order for an autistic person’s life to matter they do not have to be “great” or exceptional. In order for there not to be a eugenicist attempt to eradicate autism, autistic people should not have to prove their worth.
In this same article, Baron Cohen, whilst discussing the ethics of attempting to prevent autism during pregnancy, writes, if a ‘treatment’ to reduce testosterone in a foetus (believed to contribute to autism) “helped that baby’s future development, we would all be delighted”. “Delighted” to get rid of autism? He then goes on to caution against preventing “not just autism but the associated talents that are not in need of treatment”. The idea that you can take an autistic person and separate out the traits that society is ill-equipped to deal with but keep the characteristics that would benefit society is problematic. The concept of taking the ‘good bits’ from an autistic person, but preventing and eventually eliminating the ‘bad bits’ is dehumanising and concerning. Baron Cohen’s role at the helm of Spectrum 10K has only stoked concerns that the study’s intentions are dubious.
The National Autistic Society (NAS), one of the biggest autism-focused organisations in the UK, has expressed its reservations towards Spectrum 10K project. It states that it “declined to take part” in the Spectrum 10K study and urges “autistic people and parents considering taking part to look into this study carefully and consider the potential benefits and harms”. It goes on to discuss the difficult history of research into autism: “for many years, autism was mis-characterised as a disease or illness and something to be cured… Society and researchers still have a long way to go to fully earn the trust of all autistic people.”
All too often in research and autism discourse, the voices of autistic people are lost or drowned out. Many conversations about autism continue to be dominated by those actually removed from autism: parents and researchers rather than autistic people themselves. Autism Speaks contradictorily only has two autistic board members out of a total of 28 directors on its board. For an organisation which quite literally claims to speak for autistic people and related issues, autistic voices are seemingly rare. Many (but admittedly not all) of those who have come forwards as Spectrum 10K ‘celebrity’ ambassadors are, again, not actually autistic people themselves, but the parents of autistic people. These include TV show host Paddy McGuiness, the father of three autistic children, who described himself as “excited” by the project, and television personalities Carrie and David Grant, who describe Spectrum 10K as offering “hope that it could have real impact on health outcomes and the support available”. In particular, David and Carrie Grant highlighted their “passion…to see more being done for girls and women on the spectrum” as key reasons for urging others to take part in the study. But rather than platforming the voice of an autistic woman or girl, or supporting one of the many organisations that work in partnership with autistic women and girls to aid them, this plea again takes up space that should be for autistic people. A quick Google search of autism will yield countless results and blogs on parenting autistic children and similar parental-focused issues. It requires concerted effort to actually find an autistic voice. Whilst doubtlessly harbouring good intentions, those who speak over autistic people are, in reality, doing very little in terms of tackling societal stigmas and supporting autistic individuals. A seemingly obvious first step of rectifying the many issues with the way we discuss autism is surely to listen to autistic people.
The outcry over both the Judge Rotenberg Centre and the Spectrum 10K study also forces us to examine the way society interacts with disability more generally. The social model of disability, developed as part of the disability rights movement of the 1960s and 1970s, urges us to change the way we consider and discuss disability. It holds that there is nothing intrinsically ‘wrong’ with a disabled person, but rather it is society which is at fault for disabling the individual. This model highlights the systemic barriers and impairments that make life more difficult for disabled people and urges for a more accommodating and supportive social structure. In contrast, the medical model of disability sees the individual as impaired and shifts the ‘fault’ onto them. These two contrasting models are caught up in efforts to ‘cure’ autism. The social model of autism posits that autistic individuals face barriers from an unrelenting and unaccommodating neurotypical society. It still recognises autism and autistic individuals as disabled – not ‘differently abled’ – as they are disabled by neurotypical society. The structural, cultural, and institutional barriers autistic people face do not make them ‘differently abled’, but actively work to disable them.
Those who advocate the social model of autism are also therefore suspicious of any attempts to find a cure for autism. There are many ways society can support autistic people and make their lives better, and the social model encourages this, but attempts to treat or prevent autism switch the lens to a medical one. Studies with the aim of better understanding autism and to improving the lives of autistic people are to be encouraged, but when they are instead attacking autism and therefore autistic people, often subtly through the language of ‘treating’, ‘preventing’, and even ‘supporting’, these studies understandably ring alarm bells. Autism ‘treatment’ through ECT at the Judge Rotenberg Centre or the Spectrum 10K genetic research do not address the societal problems around autism and the treatment of autistic person but, as per the medical model of disability, scrutinise and in many cases punish the autistic individual for simply being themself.
For many autistic people, autism is part of their identity. For me, being autistic is as much who I am as having brown eyes or being mixed-heritage is. None of these characteristics can be fundamentally changed or altered and nor should they be. Reading about genetic attempts to cure or prevent people like me is as dehumanising as it is insulting and offensive. Autism cannot be extracted from the individual, leaving a shiny, super-talented genius behind; for many of us, it is a fundamental part of who we are and our identities.
In retaliating against efforts to cure autism, the names of exceptional autistic people have been reeled off and the prospect of their never having been born pondered. From Albert Einstein to Anthony Hopkins, autistic people have doubtless achieved many amazing things. But we should not oppose those who seek to eradicate or cure autism because of the successes of notable autistic individuals, but because autistic people are people too. Our lives are important and worthwhile no matter what we may or may not achieve. Support for autistic people should not be predicated on exceptionalism, but on humanity.
At the 1993 International Conference on Autism, Jim Sinclair, an autistic man, stated: “autism is a way of being. It is not possible to separate the person from the autism. Therefore when parents say, ‘I wish my child did not have autism’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (non-autistic) child instead’.” When we talk of curing or preventing autism, we are directly attacking autistic individuals and the value of their lives. Autism often moulds the fundamentals of a person’s life and identity and so an attack on autism is almost impossible to separate out from an attack on autistic people themselves. Autistic people need support; we need extra accommodations and assistance; we need empathy, compassion and understanding. But we do not need curing.
Artwork by Mia Clement