I work with a few researchers, but I’m really picky who i associate with and who I’m happy publically being named alongside.
It’s not because I’m a snob, but it’s because if I’m going to engage in research either as a co-creator or as a participant, i need to know who is doing it, can I trust them, what’s the purpose of the research, has the research been shaped and created either by or with Autistic people and will that research have a negative impact on the lives of Autistic people.
I have good reason to do this, part of which is covered by what you will read further down around the ideologies in Acadamia, partly because of previous issues with Researchers and Academics which I highlighted in my articles on Autistic Identity and Autism Speaks UK/Autistica and partly because of how flawed Autism research is.
To be honest I wish more Autistic people would apply those principles and understand what they are taking part in when participating in research.
Once the questions have been answered, for me at least, it doesn’t leave many people in the field to work with.
Academics tend to live in a bubble, where most don’t understand or realise the outside implications of their work. Researchers tend to focus on a particular point of interest, applying their particular area of focus, often in isolation to other fields of work.
But just because Researchers are in a bubble, it doesn’t mean their work and their words are. The real-world application of what they do exists and all too often it exists in ways that I’m sure many don’t intend. When research is picked up by the media for example (and usually leads to the word ‘cure’), or when some tiny aspect of a research paper is leapt upon and extrapolated beyond all belief.
Often societal thinking is strongly influenced by this and it’s where many of the myths and stereotypes around Autism and Autistic people originate from. This then can and does seep into Professional consciousness, who in turn reinforce those stereotypes and myths into their practice and reinforce it in parents and Autistic people.
These myths and stereotypes then become so culturally embedded. Research flows round them with the ease of air filling a vacuum.
It’s this viscious circle that leads to the point of this article. Which, is not about me or by me, but by Dr Sophie Vivian, who has a PHD in Ethics.
Dr Vivian studies Neuroscience at Kings College in London, with obviously a significant aspect of that covering Autism.
Dr Vivian has often been horrified by the way that her Lecturers and the course material dismissed, stygmatised and dehumanised the very people they were studying and at points, whilst offering definitions of what makes Humans, Humans, actively excluded groups of people (including Autistic people) because of what they considered deficits, often based on very outdated and antiquated notions, that have long since been moved on from and re-understood.
Obviously with a PHD in ethics, Dr Vivian is very well placed to identify notions of dehumanisation and can recognise the chain of harm that compounding those notions into the the minds of budding Neuroscientists can cause.
Dr Vivian serialised her thoughts on the issue and the outdated and antiquated papers she had to study for her course, on Twitter, to huge response, but actively wrote a letter to Kings College London to challenge what she had experienced.
Dr Vivian has asked me to publish this letter, never before seen publicly, in the hope of bringing it before a wider audience, to highlight many of the issues I’ve cited above and also in the hope that it’s put before people who can really influence change.
Needless to say:
Over to Sophie:
16 November 2019
An Open Letter to King’s College London
Regarding the Use of Dehumanising Rhetoric
Only months before her death aged 99, in a debate with the philosopher Simon Blackburn and the neuroscientist Colin Blakemore, Mary Midgley commented on Blakemore’s attempt to gain traction on what it means to be human by excluding some people such as those with advanced dementia:
I’m shocked and appalled by the move, of making definitions of what it is to be human such that you can cut some people out. Being human is a very complicated thing, and as it is a kind of compliment, if you start taking it away, you exclude a person from the group of which we are all a part. This is no trivial matter. I don’t know what makes anybody want to do it.(Midgley et al. 2016)
Those who see it as their place to do so, have tended to define humanness via a process of exclusion, rather than inclusion. Those who are excluded, and so dehumanised, are done so on the basis of what they supposedly lack: intelligence, rationality, self-determination, autonomy, individuality, integrity, subjectivity, sentiment, violability, morality, pain-sensitivity, and – relevant here – mentalising ability (Haslam 2006). Rhetoric to the effect that an out-group lacks any ability viewed as essential to humanity enables them be seen as subhuman, and, this can in turn promote prejudice and violence (Cassidy et al. 2017; Kassin et al. 2014).
Though I am confident that teaching staff at King’s College London (KCL) conduct themselves with the highest ethical standards in their personal dealings, it is possible to overlook the complex and veiled implications of what is said, and slide into dehumanising rhetoric despite the best of intentions.
It is my judgment that this has occurred in the Applied Neuroscience MSc. To see why I have come to make this inference, it is necessary to provide some detail, so that my reasoning – and, I suggest, the reasoning of my fellow students – may be followed. My aim here is only to shed light on this matter, and not to cast aspersions.
As a student of Applied Neuroscience at KCL, in the lecture material and in further recommended readings across a number of foundational modules, we learn that there are a number of groups who display deficits in their mentalising abilities. The ability to mentalise at a certain level is referred to as being in possession of a “theory of mind” (ToM).
ToM deficits – we learn – go some way to explaining the social communication difficulties found in: autism (Baron-Cohen et al. 1985); schizophrenia (Sprong et al. 2007); attention deficit hyperactivity disorder (Korkmaz 2011); major depressive disorder (Lee et al. 2005); various specific language impairments (Nilsson and de Lopez 2016); certain traumatic brain injuries (Bibby and McDonald 2005); alcoholism (Uekermann and Daum 2008); dementia and Alzheimer’s patients (Gregory et al. 2002); blind children (Bedny et al. 2009); minimally verbal children with cerebral palsy (Sandberg and Hjelmquist 2003); children with Down’s Syndrome (Zelazo et al. 1996); Parkinson’s patients (Saltzman et al. 2000); frontal lobe patients (Rowe et al. 2001); and children with specific language impairment (Miller 2001).
The group most associated with ToM deficits are autistics (Happé 1994), and this group will serve as the focus example in what follows, though it must be noted that the problematic implication I discuss applies to all the above-mentioned groups. To be clear, the problem I am speaking to arises not in the bare presentation of any research data, rather, 1) in the commentary that accompanies it, and 2) in the lack of any balanced counterevidence provided.
I address these concerns in turn:
In addition to learning about the mentalising difficulties the above-mentioned populations can display, we are told in the lectures that “mentalisation… is the final part of the story about what makes us human”, a message that is echoed in core reading material:
The advanced function most clearly associated with the reorganization of the human brain is complex social cognition [ToM]. No less than language, it distinguishes humans from animals.(Premack 2007)
We are led in the lectures through the stages of mentalisation: first (I don’t know I exist), second (I know I exist), third or “theory of mind” (I know you have different thoughts to me)… right up to fifth, which, we are told, is the only level that “makes us human”. At this point it is impossible to escape the implication that persons lacking fifth order mentalising abilities – such as those we have learnt about prior – are subhuman. Indeed, this is indicated in the following statements made by a KCL lecturer:
If you look at the dog here, this is third degree mentalisation fail
Neanderthal had fourth degree mentalisation… it didn’t have what we have
Also disturbing, is the claim made by the same lecturer that:
[fifth order mentalising]… led to art and to culture and to science
This amounts to a sweeping denial of the substantial contributions those lacking fifth order mentalising abilities have made to those practices. If fifth order mentalisation is responsible for all that we value and is what makes us human, what then are we to conclude about populations that only reach levels two, three, or four? That they are subhuman, on par with dogs or – if they are really clever – perhaps chimpanzees or Neanderthals? The leap is not only there for students to make, it has been made by some notable cognitive psychology professors.
In one example, the likes of which is rarely seen in modern times outside of the extreme dehumanising ‘animalisation’ propaganda of genocidal conflict (Haslam 2006: 252-53), Steven Pinker, in his book The Blank Slate, alleged:
Together with robots and chimpanzees, people with autism remind us that cultural learning is possible only because neurologically normal people have innate equipment to accomplish it.(Pinker 2002: 62)
Pinker’s book was highly influential, being endorsed by the likes of Richard Dawkins, Francis Fukuyama, and Daniel Dennett, none of whom seemed to recognise the ethical implications of Pinker’s thesis, thus demonstrating clearly that those who make this error do not do so through lack of intelligence, but rather, unfamiliarity with the way such language can – and does – lead to violence, genocide, and general injustice.
At this point, one may be inclined to think that I am overstating the danger, however, consider these two quotes by well-known autism researchers working in the field today:
It’s as if they [persons with autism] do not understand or are missing a core aspect of what it is to be human.(Falcon and Shoop 2002)
[Autistics lack] one of the quintessential abilities that makes us human.(Baron-Cohen 1997)
The widespread dehumanisation of autistics is not intentional per se, but instead typically occurs – as at KCL – in the process of attempts to define ‘what makes us special’ and so explicate humanising concepts, such as personhood, the self, and agency, for example, as in Goldman (2006), Currie and Ravenscroft (2002), Blair (1996), Kennett (2002), and Farkas (2017).
Indeed, denying the autistic person personhood via rhetoric to the effect that they lack certain humanising attributes has been routine since the very conception of the condition and has ongoing real-world implications.
The ‘founding father’ of the current Gold Standard behaviourist treatment for autism (Applied Behavioural Analysis) is the Norwegian-American psychologist and professor at the University of California, Los Angeles (UCLA), Ivar Lovaas. In an interview with Psychology Today in 1974, Lovaas described his approach to a distressed autistic child named Beth who was under his care.
When Beth resorted to self-harm in an effort to self-regulate, Lovaas recounts:
I just reached over and cracked her one right on the ear. She was a big fat girl, so I had an easy target… I let her know that there was no question in my mind that if she hit herself again, I was going to kill her.(Chance 1974: 78)
Such violence, which was routine in his practice, was no doubt enacted with a clear conscience by Lovaas, given his beliefs about autistic people generally. In the same interview, this founding father of their ‘treatment’ said:
You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense – they have hair, a nose and a mouth – but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.(Chance 1974: 76)
Such attitudes sadly, have not died with the passage of time. At the Judge Rotenberg Centre in the United States, autistic people are still today made to wear back-packs that deliver to them a painful electric shock of 41 milliamps – 10 times the amount used in most stun guns – when they ‘misbehave’ (Pilkington 2018).
Yet the evidence for the widespread mistreatment of autistics is nowhere more apparent than in research that looks into the autistic life expectancy. While autism as a condition itself is not believed to shorten life expectancy, the average life expectancy of a person with autism in the United States is 36, with suicide, infanticide, and medical neglect being some of the leading causes of death (Guan and Li 2017).
Recent research from the Autism CRC of UNSW Sydney (where I undertook my own PhD) revealed that the mortality rates of those with autism are more than twice those of the general population in New South Wales, Australia (Hwang et al. 2019).
Closer to home for KCL, just this week, it was revealed that several autistic children as young as five have been repeatedly locked in small cupboards at Ardley Hill Academy School in Bedfordshire (Pring 2019).
The point is, this is not ancient history.
This is business-as-usual for autistic human beings in 2019.
Given this ongoing dehumanisation, those in positions of academic power must proceed with extreme caution and not perpetuate rhetoric that by implication denies these vulnerable individuals their humanity.
The dehumanising rhetoric aside, it is doubly concerning that nothing from the growing body of mentalisation counterevidence has been presented to students in the Applied Neuroscience MSc.
For example, emerging research exists demonstrating that non-autistics experience just as much difficulty in taking into account the mental life of autistics and empathising with them appropriately, as the other way around (Milton 2012, 2017; Sasson and Morrison 2017; Sasson et al. 2017; Sheppard et al. 2016).
Non-autistics – with supposedly no ToM impairments – have been found to be impacted in equal measure when it comes to ‘reading the minds’ of autistics (Heasman and Gillespie 2018). Indeed, the ‘signalling problem’ between these two groups is two-sided (Brewer et al. 2016), leading one to muse that perhaps, to autistics, Stephen Pinker looks and sounds much like a chimpanzee, or a robot; taking in data from the surrounding environment and spitting it back out unreflectively.
As students at KCL, we are not made aware that for more than a decade now serious concerns have been raised regarding the validity and soundness of mentalising investigations (Dalton et al. 2005; Gernsbacher and Frymiare 2005; Kapp et al. 2013), which Duffy and Dorner summarise in “The Pathos of “Mindblindness”: Autism, Science, and Sadness in “Theory of Mind” Narratives”:
The condition of “mindblindness” is itself an act of imagination, a story told by cognitive scientists about the evolution of the mind and individuals who have followed that evolutionary path. In the absence of definitive physiological or neurological markers, ToM remains a construct, a theory of a theory, its “reality” an outcome of laboratory tests and the rhetorical efforts to persuade others of the validity of those tests.(Duffy and Dorner 2011: 209)
Surely, it is pertinent for a university which prides itself on inducing critical thinking in its graduates to provide balanced evidence. Particularly since further investigations into mentalising have managed to establish something rather embarrassing– those with ‘typical’ results on standard mentalising tests consistently overrate their own abilities.
As it turns out, it is normal to be not nearly as good at mentalising as you commonly think you are (Ames and Kammrath 2004; Epley and Caruso 2008; Hall et al. 2009; Realo et al. 2003).
As Professor Shannon Spaulding, who has spent much of her career examining this phenomenon, put it:
We consistently and substantially overrate our ability to accurately judge others’ mental states and interpret social interactions… whatever the cause, the consensus from the empirical literature is that mind misreading is very common.(Spaulding 2016: 423)
Academia, she goes on, has tended to focus exclusively on the so-called ‘telepathic’ abilities of typical adults while neglecting to focus in any systematic way on the much more common mind misreading that occurs in all of us.
Somewhat ironically – Spaulding notes – though cognitive psychologists do examine mind-misreading as it exists in chimpanzees, children, and (unsurprisingly once again) those with autism, they disregard it in themselves, falling victim to the very same Self-Serving Attributional Bias that contributes significantly to our mind-misreading in the first place (2016, (2016: 423).
The internal logic of ToM may itself be to blame for this oversight.
As David Smukler writes in his essay ‘Unauthorized Minds: How ‘Theory of Mind’ Theory Misrepresents Autism’, ToM models of mentalising are inadequate in large part because they fail to consider what those who supposedly lack this module themselves think and feel (2005: 11-24). In effect, ToM theory is itself “mindblind”.
The reason one group gets held responsible and not the other, one group gets dehumanised and not the other, is, as vice president of the Autism Association of New England Philip Schwarz explained in an interview:
Non-autistic people too, are rather lousy at understanding the inner states of minds too different from their own – but the non-autistic majority gets a free pass because they assume that the other person’s mind works like their own, and they have a much better chance of being right.(Szalavitz 2009)
As good, epistemically humble scientists, I am sure that academic staff at KCL do recognise that we are all rather poor at intuitively understanding minds that are different from our own. When social communication fails, this does not mean the person we are trying to communicate with, trying to reach intersubjectivity with, trying to extend our own agency with… does not have a mind, does not have agency, is not human. What we think of as the ability to mentalise, to ‘read someone’s mind’ then, is perhaps the rather less impressive coincidence of happening to possess a similar mind, and what we think of as intimacy and a shared-humanity is nothing more than mirror-gazing.
This unhappy situation is easily remedied by the removal of such rhetoric, and, the addition in the reading list of some contemporary counterevidence.
We want so desperately to know what makes us special, what binds us in our apparently unique place among the other worldly creatures. Yet, when we draw lines around humanity we invariably cut some people out, prophetic words from Mary Midgley.
There is simply no need to speak at all of “what makes us human” in scientific discourse. What makes us human is nothing, save perhaps our rich diversity.
I propose that those charged with nurturing the attitudes of the next generation of researchers and clinicians, speak more to that.
While nothing noticeable has changed in the six months since Sophie sent the letter, she did eventually (months later) receive a reply that was, on the surface, quite positive –
Our conversation last year sparked a whole series of conversations with students and lecturers across the IoPPN, and has resulting in our Deputy Dean of Education, Faculty Senior Tutor (Student experience), myself and another programme lead getting together to initiate a piece of cross faculty research around language used when teaching. We are at the point of putting together a funding application and will also be reaching out to students and staff to get involved.”
Sophie responded to me with this:
I suppose this is a good step, however, I think it still distracts from the real issues. By focussing on fixing language use (i.e. “disease”, “patient” “severe”, “devastating”, “burden” which are constantly used in reference to autism in my course) we are not really getting to the heart of the issue, which is that there seems to almost no awareness among tutors of the complex ethical and social issues underlying the science we are studying.
For example, in the latest module I completed we were asked to discuss the kinds of biomarkers that might be developed for autism, and why they could be useful. When I pointed out in the Discussion Board that many autistic people are not in favour of research into biomarkers, and indeed, have been actively campaigning against biomarker research for decades, this seemed to be news to students and tutors alike.
Moreover, we are told constantly that: ‘treatments and cures are of paramount importance, owning to the severity and economic burden of neurodevelopmental conditions.’ Yet in the UK, numerous studies have revealed that the autism community (autistic people, their families, clinicians, and practitioners) is very dissatisfied by the heavy bias towards basic science.
The community harbours extensive objection to the fact that more than half (56%) of the UK grant expenditure is spent on projects in the areas of biology (totalling £11.6 million) while comparatively little (5%) of research is targeted towards identifying effective services for autistic people and their families (Pellicano et al., 2014). Nowhere I have seen are these facts pointed out to students.
It’s really easy to make blase statements, judgements and talk about people as though they are somehow ethereal and not quite real, – to separate yourself from them entirely and play the part of the anthropological observer, when you aren’t actively engaging them in the conversation.
The biggest thing that concerns me about the response, aside from the fact that they appear oblivious to the real world implications of what they doing, is that the only way they can see to negate the justified use of language and teaching that harms an entire marginalised community of people, is to evidence it with research.
It’s the Academic equivalent of telling someone you are stabbing repeatedly with a knife, that you need research to evidence that it is causing them harm before you will stop.
By the time a research application goes in, by the time the research is formalised and completed and peer reviewed – assuming that it is in in favour of ending language and rhetoric like this, we could be talking years before any significant change is put in place and further years before real change occurs due to the trickle down effect of management making decisions that staff need to implement.
How many new Neuroscientists will qualify and write papers in the meantime that reinforce the stigmatism and marginalisation of Autistic people.
How many other Universities around the world are doing the same?
All I can say is that I am glad for people like Dr Vivian, glad that there are people out there challenging these notions and not trying to excuse or justify them.
If anyone from Kings College London Neuroscience department reads this and would like to reply, I’ll happily publish it.
But you know, I doubt that’ll happen, this is a website run by an Autistic person, someone not quite human apparently.
And they say Autistic people have no empathy…
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