23. From the archives: 'Aspergers' was cancelled, but is 'autism' neutral?

Feb 07, 2023

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Episode summary:

Articles, books and videos mentioned in the episode:

Asperger's Children: The Origins of Autism in Nazi Vienna
Book by Edith Sheffer

The truth about Hans Asperger’s Nazi collusion
Simon Baron-Cohen

Dissolving the Behavioral-Tech-Industrial Complex
Grace Taylor Rae

ChrisTiana ObeySumner,
DIS2018: "My Story of Institutional Racism and Ancestral Deliverance"


Hey sibling,
Today I’m sharing the first of several bonus episode from the archives, of my first podcast that I had in 2020, that is no longer online, but it’s still good stuff, and so I’ve had it in my back pocket to share some of those episodes, because of the politicised framing of the subjects I talk about. The critical perspectives in these episodes are also what we get into in the first three planets; these are part of the tunnels of un, the unlearning and how that uncomfortable work - the discomfort - is a necessity for change; across the personal and systemic.
Let's get started;

Welcome back to the solar system podcast. This podcast is for sensory siblings seeking another way to see know and be yourself. And it currently offered you buy the autism construct and the autism industrial complex. And I'm going to speak about those a little bit today. This podcast is a radical reimagining of what's possible when we reframe our different pneus as relationally produced when we redefine ourselves from within our bodies, within our lived experiences within our communities, within the social and affirmative model of disability, through the lens of disability justice, and through culture and connection, and this episode is called Asperges was cancelled, but is autism neutral. And we're continuing with the subjects included in the tonne of unknown theme in the solar system. And in the tongue of Iran, one of the NS one of the tunnels is unravelling the autism construct. And to introduce this and explain what I mean. I'm going to start with a simple move, which is to make a distinction between your body or my body, and the story told about it. Okay, so that you and all your traits and experiences and exquisite humaneness as an intentional being gifted with life gift us with another day to exist. And then there are the infinite possible stories that we could tell in order to represent you and your life. In fact, I've just told one by saying that you're an intentional being with exquisite humaneness. Imagine all the possible stories that you could think of to explain who you are, or to represent yourself. Not one of them would do justice to the fullness of how your life is inscribed into the very fabric of consciousness and universe as an energetic ephemera, an expression of possibility. Oops, there's another story. There's so much more to life than just the cosmic and exquisite. And my point really is that any story told by humans about humans necessarily has to leave things out. And that's okay. Because that's how we create meaning and focus, we can't possibly hold your entirety or my entirety. In our perceptions in our minds, let alone in a story. There is always some loss. Stories are what audio engineers might call lossy, some information, some details are compressed out. In order to make the file size small enough to process or stream. I used to subscribe to Tidal, which is if you don't know a music streaming app, like Spotify or iTunes, and they had to subscription levels were two different names. And I'm not sure if they still have this, but one of them cost more. And these two levels were lossy, which is the cheaper one for which the songs were more compressed, so smaller file sizes, and good for streaming quickly. And then the more expensive form was last less, for which the audio quality was higher, less compression of detail and so larger file sizes, more for the phone or computer to process and download, but increased to finer details in the sound. As a side note, one story I tell of autistic labelled perception is using these terms, I find it a useful analogy to say that we are lost less in our perceptions. There is more sensory and perceptual detail and less loss of that sensory information that's available. But it also takes longer to process and a different organisational structure in how sensory information must be organised in order for it to make sense. We process and organise experience differently. Hence the title of my book lossy ecology. I imagine a world in which there isn't a centralised Universalist knowledge, but an ecology of different types of compression and expression of reality that intersect and don't always make sense to each other or translate well, but can coexist and unfold on different planes and frequencies. Anyway, I digress. To go back to my starting point, there is you and there are all the possible stories about you that could be told. And so we can look at autism as one possible story. And that allows us to examine it. And today I'm going to talk about and critique the story that autism tells and when I do so, know that it's not about you but about the story. And before we dive in, I also want to acknowledge that many people don't have the option not To have that story imposed onto their bodies, many people identify with it as a way to gain access to resources. And for some, they feel it even represents and empowers them. And I don't want to shame anyone for doing so, use it, maximise it where it's the only available option. And it's also be visible in that as a way to begin to destigmatize and remove the shame and work against ableism. That continues to foreground a fiction of a normal way to be human. And at the same time, while these systems that make autism the dominant dominant story continue to exist, we've also got to really understand what we mean when we say autism and know what we're messing with. What version of a person is being told? What is being filtered and compressed out? What is given attention and what is ignored? What is eclipsed out and suppressed within? What is included and foregrounded and what is excluded and erased? What thoughts emerge from that story? What beliefs and ideas and ideals are implicit within it? And how does it lead us to feel about ourselves and each other? What actions and structures are based upon the story it tells? And what impact do those have? Does the story that the clinical term autism tells support who you are? And does it lead to yours and others agency and empowerment? Does it lead to the world we want? Does it create a better world, we have to also distinguish between autism and autistic culture, which for me are poles apart, but also get mistaken for each other because of the use of the same root word. Autism being the clinical category and status applied to specific bodies by appointed experts, versus autistic, being the self claimed identity and shared culture that doesn't yet have full reclaim status, because of the degree to which it's embedded in systems of education and health care, and disability and Policy and Social Services, and in ways that are more or less totally outside the control and reach of the people autism supposedly describes. So today, I want to do just a little bit of that unpacking of the story of autism that is distinct from your body, and distinct from the ways in which artistic culture may have helped you see more of yourself. And the way I'm going to begin to do it is through critiquing an article by Simon Baron Cohen, our public enemy number one, no, I'm just kidding. I say that only because Baron Cohen has been responsible for so much misinformation with theories like mind, blindness, and extreme male brain, which I think he's now retracted. So he's an easy target. But also, really, I would love Simon Baron Cohen, to literally hand over his platform and influence to someone who has the lived experience, and who maybe isn't given the same kinds of opportunities that he has access to those social societal roles of expertise because of social barriers, and who doesn't have the power to determine what their body means and how it's interpreted within the social structures, who isn't in a position to produce knowledge on who they are, that is then institutionally distributed and affirmed to someone who's done the work to examine the biases in these fields to their roots, because they are someone who has had to do that work to unravel, why they are subjected to the harmful aspects of how these fields function to maintain specific notions of what a typical body looks like. That bodies in scientific research are called the control group. No less. Yes, you heard it, right, the control group, the norm from which pathologies are measured. So that's what I would want Simon Baron Cohen to do. In the meantime, the article he wrote is linked to in the show notes at the end, and it's called The Truth about Hans Asperges. Nazi collusion, Simon Baron Cohen absorbs the grave revelations in a study on a paediatrician and meshed in autism history. So the article by Baron Cohen is published in Nature portfolios online magazine for the research community, which has a monthly readership of 9 million people. The article was published in May 2018. So we're going back in time here a little bit, pre pandemic. And yeah, I'm really not targeting Baron Cohen as much as using his approach in the article as an example, an example of how the entire field an industry of autism has reacted and learn from or rather not. From the revelations published in the book that the articles about Okay, so the book that

Simon Baron Cohen writes about in this article is Asperges children and it's by Edith Schaeffer. And if you haven't read it or haven't even heard about it, I strongly urge you to buy a copy or request it at your local library. Because this book does an incredible job of delving into the incredibly dark histories of the Nazi era with a specific focus on demonstrating how Hans Asperges after him Asperges the dark Gnostic categories named after how he was active in the death machine that killed 1000s of children, who within the regime were deemed incompatible with the fascist political agenda of creating a superior, so called superior singular, homogenous Aryan race of groupthink productive and obedient workers. So this book is an incredibly hard read, because chef has gone into those records and traced and Asperges involvement and complicity in genocide, and in ways that are undeniable. Hans Asperges, was responsible for assessing whether the children sent his clinic when moldable into editable citizens or not, and determining whether then they should be sent to the speaker grinned, which was one of the child death camps in the Nazi regime. This incredible book also does something that I think has been left unacknowledged by the autism research field at large, which is to demonstrate unequivocally how the clinical category of autism itself also arose out of this context. In the article on, Simon Baron Cohen's reading of this new research does that part justice, he says, and I quote, I no longer feel comfortable with naming the diagnosis after Hans Asperges. However, he makes the article about whether Asperges the clinical category it should be abandoned. And by the way it has. So I'm going to read from the article and I want you to listen out for the sleight of hand, which diverts our attention away from the problematic roots of the story of autism, and locates the arena of critique into the clinical diagnosis of Asperges. Only the know the name Asperges, effectively sidestepping the harder question that we'll ask in a moment. So I'm going to read from the article. And I want you to listen out for the sleight of hand, which diverts our attention as the reader away from the problematic roots of the story of autism and simply reduces the arena of critique on to whether the term Asperges should be used or not, and effectively sidestepping the harder question that we'll ask in a moment. So I'm going to quote from the article. So I quote The Austrian paediatrician Hans Asperges, has long been recognised as a pioneer in the study of autism. He was even seen as a hero, saving children with the condition from the Nazi killing programme by emphasising their intelligence. Which just to interject is a whole other thing to unpack, but I'll continue. However, it's now indisputable that Asperges collaborated in the murder of children with disabilities under the Third Reich. Historian hertz with check fully documented this in the April 2018 issue of molecular autism, a journal I co edit. Now historian Edith scheffers remarkable book as Burgess children builds on checks study with her own original scholarship, she makes a compelling case that the foundational ideas of autism emerged in a society that strove for the opposite of neurodiversity. These findings cast a shadow on the history of autism, already a long struggle towards accurate diagnosis, societal acceptance and support. These revelations are also causing debate among autistic people, their families, researchers and clinicians over whether the diagnostic label of Asperger's Syndrome should be abandoned. Okay, end of quote. And so the rest of the article focuses on Asperges, the paediatrician and I suppose, as the clinical category that takes his name, but does not question autism. Baron Cohen goes on to say For brevity and neutrality, I favour the single term autism. However, because of the considerable heterogeneity among autistic people, I think it could be helpful for them and their families together with autism researchers, clinicians and relevant professionals to discuss where the subtypes should be in produced, and of quote, which again, could also do with unpacking? Because this sounds to me like functioning labels and more of this problematic act of defining people within fixed categories of degrees of disability, which then leads to more exclusions and assumptions about abilities and intelligence and communication. I'm now going to quote the back of Edith scheffers brilliant book, and it literally says, I quote, in the first comprehensive history of the links between autism and Nazism. Prize winning historian Edith Schaeffer, uncovers how a diagnosis common today emerge from the atrocities of the Third Reich and if quote, so the clinical diagnostic category of Asperges was actually never one that Hans Asperges used himself, but was in fact coined by psychiatrist Lorna Wing in 1981. When she translated and shared his clinical writings about autism, I'm now going to quote another book that came out two years before scheffers. This book is called war on autism, on the cultural logic of normative violence by Anne Maguire. Another brilliant book, which unpacks autism as a construct which has undergone so many changes and uses and this book really speaks about the production and reproduction of autism as a cultural crisis in order to critically examine autism as a story and construct with impacts. And McGuire draws on the technological approach of Michel Foucault. For those listeners who like to know all the sources, and Foucault his book of lectures, titled abnormal is another one to dig into, to understand how the medical gaze and specifically the diagnostic assessment function as sites of power. But yeah, I'm going to now quote from war on autism. And the quote mentioned, both Leo Kanner and Hans Asperges are both credited with the introduction of the word autism as its own separate clinical category. So I quote, eugenic practices and ideologies are both absolutely reliant upon and generated the need for more and more means of identifying defiance, more and more lines separating normalcy from abnormal See, such historical entanglements, in which Canada and Asperges were invariably caught, became the cradle for contemporary conceptions of autism. In other words, end quote, sorry, in other words, when you have a political context, such as the Third Reich, and a European context, such as Vienna in which psychiatrists and psychologists and especially child psychiatrists were on the increase since 1920s, and a context in which there is no need to go back. In other words, when you have a political context, such as the Third Reich, and European context, such as Vienna, in which new fields such as psychiatry and psychology, and especially child psychiatry were being moulded, and child psychiatry didn't exist before the 1920s. And you have a context in which there is extreme pressure to not only produce clinical categories as a way to establish and further your career, but also as a way to remain safe and valued within the context of politically enforced eugenics and genocide, a genocide that was about separating people out according to their race, religion, behaviour and physique. And autism arose in that context, as a way to maintain a rigid and narrow notion of a desirable and normal body. We have to look at, why are we still using this genocidal angiogenesis term? Now? Why do we need right now a category that separates humans out from normal and labels them abnormal against their own will? If you look at the DSM definition of autism, you see that the language consists of words like deficit abnormal, without ever describing what normal is why some things are considered normal and others not. And to whom we are comparing people and finding them as coming up short and not having enough of something so as to be able to say that they have a deficit. And what do we mean by normal? Autism is essentially defined by who you are not

and what you are not. And when we say you are not normal, it's another way of saying you're not fully human. It's a dehumanising construct. Now we unpack this in a much deeper way in solo siblings. But for now, I want to say that we must look to other frontiers and movements to understand how important and powerful it is to deconstruct categories at the sight of their construction. It tells us what they really mean, and shows us the implicit power relations hidden within them that are reenacted in their use. For example, we can look to feminism and intersectional feminism, especially to understand how these movements have been able to deconstruct the ways in which women has come to be defined by men and within whiteness. We can look to trans scholars and intersex activists to see how binary gender has been enforced from the start, through surgeries on intersex kids, and how we can unpack that through tracing the histories. We can look to the history of the West, and unpack the roots of homophobia in the laws created by European kings that decree it to be unlawful to be gay, and then transported that agenda across colonial lines. We can learn from race scholars of how eugenics and racial sciences emerge from the agenda of white supremacy, and the brutality and greed of European colonisers. My point is that autism has remained largely unexamined by those professors and professionals who use the word. And there are a few reasons why this might be the case. And I'll just share a few that come to mind. Firstly, is that people who think differently, and who are perceiving and experiencing in ways that are not as supported by the cognitive tools available, by the ways that information and knowledge are shared, taught and presented, it's then harder to muscle in on the wider conversations in research in these institutionalised fields of knowledge of science of academia. And autism is not in a separate silo off to the side as its own human rights frontier, but necessarily intersects with and must join with explicitly other movements, having the resources to question and think, unpaid, when you are as a collective marginalised group of, of chronic under earners, and while experiencing retraumatization of unjust systems, to be able to think and question is harder when you just need some basic needs met, and autism is a gateway for that. You also then have no choice but to reinforce its use in the systems. And thirdly, there's a lot at stake for the careers of those who might see themselves as autism professionals, a $7 billion global industry no less. According to market research The Global autism disorder and treatment market is expected to reach 7 billion US dollars by 2023. And I quote from the website, the global autism disorder and treatment market, as per the treatment type is grouped into various therapies. These are drug therapy, communication therapy and behavioural therapy, communication and behavioural therapy is at the leading position in today's global market, and will remain on top during the forecast period. deployment, communication and behaviour therapies applied behaviour analysis in brackets ABA, speech and language therapy and occupational therapy. And of quote, in other words, a huge market focused on getting rid of autistic labelled traits and strategies for learning communication. It's the same in research fields autism research spending in the US in 2016, according to the US government's Interagency Autism Coordinating Committee, totaled $364.4 million, but only 2% was spent on lifespan issues, and 5% on services. The rest is on biology as in searching for cures and causes, so called risk factors, treatments and interventions as in getting rid of visible traits and conforming people to appear normal infrastructure and surveillance. Now, I don't know what surveillance refers to here. But I'll mention that again in a moment. And then 7% on screening and diagnosis. The eugenicist ideology of the autism stories routes are inter woven into the very fabric of its current use. One of our very own solar siblings, Grace Taylor Ray has just published an article with neuro clastic which I'll link to in the show notes, and it brilliantly examines the behavioural tech industrial complex, which speaks to what that surveillance listed as a research area is likely about. So do go and check that out. Autism the story as yet To be held to account and getting rid of the term Asperges is a red herring and diversion from the deeper and painted reality that autism itself is a Genesis construct and leads to more your Genesis practices justifies harmful research on the basis that this is something we must cut off from the human, a human, a normal, which is conceived of in ways that exclude traits and exclude people. Now, I don't want to end on this note, because, okay, this might be the case. But what do we do about it? And towards that, I want to say this, there are substantially more autistic labelled individuals than there are autism industry professionals. There are way more people who would be assigned the autism status, and yet who don't consider themselves disordered, but do think they are disabled by society. By the way things are designed and structures, way more of us than there are non autistic autism experts who add to the discourse that we are disordered and nonsensical, difficult represent problems to be solved by examining and surveilling our bodies and actions and using our genetic data. This is a human rights frontier that is about to explode wide open. There are too many autism experts chasing their own tail, refusing to let go of being the expert on a kind of embodiment that they have never ever experienced. And to those professionals, like Simon Baron Cohen, I say, if you want to help autistic people, recognise that your salary comes from maintaining a construct, and its industrial system that contribute to the disablement and disempowerment of the people you supposedly help assist in which contributes to the mental health struggles of not only artistic label people, but all those who don't conform. The idea of a co morbid is such a scapegoat for how the impact of the notion of autism is also itself social rejection. Autism isn't stigmatised. It is stigma. This is a culture and human rights frontier that is about to have its day, it's time to address the ways in which the notion of autism is contributing to the harm that comes from separating out humans and placing them in hierarchies if normal and abnormal, have correct and in need of correction, of enforcing lines of difference, creating splits in the psyche of humanity, whereby parts are cut off, and humans are cut off from participating. It's time to heed the advice of genocide watch which recognises categorization and separations of us. And then, as a step towards genocide and not towards support. It's time to admit that locating the source of difference and disability on one side of that separating gaze contributes to that disablement, it's time to admit the power that comes to those who can embody that gaze of defining another according to their own perspective. So in a future episode, we'll pick up on the splits and separations and hierarchies and locate the true roots of autism, in the very formation of Western science and institutionalised knowledge in the origins of categorization as knowledge that are attributed to Aristotle in 300 or so BC, and which are reproduced in different ways by the European philosophers and thinkers of the Enlightenment era thinkers that were resourced by the slave trade and ideas which underpins so much of European western knowledge about what it means to be human to have a body and itself to create knowledge, but that also produce and not just describe difference.

And to end I want to say to you, that if you consider yourself autistic, do this reading, delve into these books, understand what is at play, because it also illuminates why it's so hard to be visible to share your experiences, and can really begin to lay roots into how this is not your failing. But it might be your calling, to forge a way of connecting with what makes you you through unlearning the ideas we are taught to think with recognising that what doesn't feel good, probably isn't good for you. And that you're having power requires dismantling of these intersecting systems. And if we're going to understand how to dismantle oppressive systems, we must follow Barbara J loves liberatory consciousness framework and understand that it starts with awareness and then analysis, lots of awareness and analysis before we get to action. And if we start taking action, and for example, arguing for autism acceptance, or removing categories without understanding the whole picture, we are skipping the steps and skipping the question of what we mean when we speak of autism as if it's a factual neutral category. When we speak of neuro diversity, we have to examine why neuro which once again places expertise in neuroscience and the neuroscientist and therefore in the scientific gays, to determine who you are, who you are not to recognise that there is no such thing as a neuro type or even neurotypical ality, to question why we are using the term diversity, which is a term from failed inclusion policies from the 70s that have been proven to not create diverse contexts, why not justice, are not equity, why leave them out? To question which hidden implicit centre from which we are diverging? Why not speak to the tools and designs and structures and labelled them as deficient? Instead, we must recognise who is telling the story that we adopt as our own whose thoughts we are thinking with what is being included or filtered out? In whose embodied languages and cultures are these stories told? And to what impact do they lead. And we must find our own ways to tell our stories and our experiences. I want to share a really powerful example of this, which is a talk byChrisTiana ObeySumner, given at the disability and intersectionality summit 2018 national conference, it's titled My story of institutional racism and ancestral deliverance. Just to give a content warning, it does include a brief overview of experiences of involuntary incarceration and psychiatric treatment. Again, it's in the show notes and you can find it on YouTube. ChrisTiana ObeySumner is a self described black, queer, disabled, autistic 30 ish year old constellation, consultant, writer, activist, storyteller, philosopher nerd, as well as a social equity consultant, educator and advocate and their work. And this talk contains so much wisdom and instruction. So do go watch it and support their work. And that's it. So I've been creating a lot of trouble in this episode. And if lots of this was new, take your time, go seek out the resources that I list in the show notes and come to your own conclusions about where to put your energy, what sources of information you seek out for self recognition and understanding and how you tell your story and share it with others. So that's it. Have a wonderful week, and I will talk to you next time. Bye



is for #autistic-status visionaries, creatives and change-makers, who are seeking a more empowering way to see, know and be yourself.