Notes On Autism And Neurodiversity
7 10月 2024
I know very little about autism.
This is my conclusion after reading two to three weeks worth of books and articles about autism, neurodiversity, and the politics of mental health. After finishing a book, I often found myself picking up another book to answer the questions the earlier book had raised in me. This loop has continued ad nauseam, and it's now October. I told myself I should be done reading this stuff and move on to other projects, but I kept flipping the pages and absorbing new information.
This inquiry came about because my partner, who was late diagnosed, was in a bookstore asking about books on autism. They were initially curious about a provocatively titled book cover by an autistic author, but they weren't interested in anything that was purely autobiographical. While they found value in reading anecdotes, they wanted research-based books that critically examined autism. I realized that I had never read much about autism, even though I had been dating my partner for several years and had several autistic relatives, so I picked up Empire of Normality: Neurodiversity and Capitalism by Robert Chapman and Neurotribes: The Legacy of Autism and the Future of Neurodiversity by the late Steve Silberman (it was quite a surprise to learn upon returning home that he had died just a few days before we bought the book).
A few days later, I decided to take a break from reading fiction and picked up Chapman's book instead. As I read the book and tried to understand their argument, I began to be befuddled by what I was reading. You see, if you read enough nonfiction, you'll start to see familiar names, ideas, and discourses pop up. It's fun to see Uncle Marx in the quotes again. But Empire of Normality also spoke a very different language than I was used to: familiar terms like neurodiversity and statistics popped up, but what in the world was a "pathology paradigm" for example?
When I finished the book, I wasn't sure I understood everything. But the parts I understood resonated with me: I was fascinated by how the "average person" ideal created from statistics became a literal ideological norm that everyone had to conform to, and the chapter on neurodivergent people struggling with "cognitive contradictions" was a profound explanation of what it's like to live under late capitalism. I knew I had to raid their bibliography to understand their theoretical background to fully appreciate what Chapman was trying to argue.
This led me to discover the neurodiversity movement, discussions around neuroqueering and neuronormativity, Mad Pride, and so much more. I talked a lot about what I was finding with my partner who was also starting to read books in this vein. Books began to pile up: Jodie Hare's Autism Is Not a Disease: The Politics of Neurodiversity, Devon Price's Unmasking Autism: The Power of Embracing Our Hidden Neurodiversity, Micha Frazer-Carroll's Mad World: The Politics of Mental Health, etc. I spent my gym sessions reading Authoring Autism: On Rhetoric and Neurological Queerness by M. Remi Yergeau and Chapman's Psychology Today articles. I've immersed myself in these ideas, and I have tried to see how they apply to my current understanding of capitalism, Japanese subculture, and more.
Even as I write the article, I'm still thinking about the bibliographies I've seen in the books I've read. There's so much to learn from this movement; I expect that I'll be reading more afterwards. It's a radical approach to see the world, one that aligns my current research interests and how I view society. So little of subculture media writing deals adequately well with social justice movements, let alone disability justice and Mad Pride. I want to incorporate these radical critiques into my writings, so I want to write a preliminary article on these developing ideas I have before I employ them in full force in my articles.
While my partner was responsible for reactivating my dissertation mode brain with their questions, I also have a personal history with autism. I remember being frustrated that my family couldn't appreciate my "difference" when I was young. In Indonesia and Singapore, autism is much more medicalized and stigmatized, allowing families to label their "troubled" children. I suspected that the diagnosis of autism in Southeast Asia was used to "excuse" families from their responsibility to raise the young. My family at least wanted to know what was "wrong" with me and couldn't understand that my individualism and skepticism of authority were just a part of me.
But the child psychiatrist who I visited thought I was fine. While I do suffer mental distress once in a while, we both agreed it's usually connected to my struggles with my family. I also believe that my "difference" comes from living in different countries and experiencing diversity. It's impossible for me to pretend that I can be "normal" in the sense of someone who has lived in a monolithic culture. For me, the banal question of "where I'm from" implies that there are conventions I should be able to follow and answer in, but I can't: I just don't have a "normal" background.
This is not to say that I don't believe that autism is real. Quite the contrary: I recognize the diagnostic power of "making up people," as Ian Hacking puts it. These categories target real suffering, but because they are "moving targets," the sciences that interact with people also change them. For example, in Unmasking Autism, Devon Price asks his readers to think about the negative stereotypes of autism found in the media and whether they try to avoid emulating those behaviors. The mental gymnastics required to avoid, say, acting like The Big Bang's Sheldon or the BBC's Sherlock means that the individual must be on his toes every second of the day. As a result, the book argues that fitting in requires too much sacrifice (physically and mentally) and is ultimately a self-defeating project. It almost seems as if autism and other neurodivergences are all defined in oppposition to "normal" behavior.
Indeed, for all the panic and discourse about autism, the definition of autism is surprisingly vague. Its English-language Wikipedia article describes it as "a neurodevelopmental disorder characterized by symptoms of deficient reciprocal social communication and the presence of restricted, repetitive, and inflexible patterns of behavior." The NHS page for "What is Autism" has no definition; instead, it brings up a lot of "mays", how autism doesn't have an obvious, and assures its readers that "being autistic does not mean you have an illness or disease. It means your brain works in a different way from other people."
The most explicit attempt to define autism that I've found comes from Nick Walker:
Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.
Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.
This is getting closer to something I could use in an academic paper, but I'm still not convinced. The description only makes sense if we assume that there is some kind of "normal" body or mind to refer to. This raises further questions: what is the concept of normality? I thought I knew how to answer this question: the ideologies that make us not question the world. But as I read about mental health, I realized how reductive this definition is. It doesn't explain, for example, how some autistic people want to reclaim the diagnostic power of psychiatry to determine themselves. What makes autism so important to their identity?
Put another way, I want to understand why, as the Socialist Patients' Collective puts it, "turning [their] illness into a weapon" is such a radical move. It seems to challenge the ideological power of normality, diagnoses, and illness by turning its premises on their head. Rather than simply dismantling psychiatry, these disability activists come together to argue that they are proud to be who they are, but society refuses to see them as people. They agitate, they call for political change, they proclaim that they are ill and that's fine. Society, however, refuses to acknowledge their existence, which is why rallies must be organized. As Sedgwick writes in Psychopolitics,
I am arguing that without the concept of illness – including that of mental illness … we shall be unable to make demands upon the health service facilities of the society in which we live.
I couldn't see autism and other disabilities as a "deficit" anymore. It doesn't make sense to infantilize them and assume they just need to be taken care of. Why did I even subconsciously see disability as a deficit, even though I had read some disability justice texts (like Marta Russell's Capitalism and Disability)? I knew it was wrong, but I was attached to this heuristic, and it annoyed the hell out of me.
So, I read. I read essays like Jim Sinclair's "Don't Mourn for Us," which pleads with parents of autistic children to see their side. When parents say they wish their children didn't have autism, Sinclair argues, 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.
I began to realize that Nick Walker wasn't joking in "Throw Away the Master's Tools: Liberating Ourselves From the Pathology Paradigm" about how this journey might require a paradigm shift. Our current mode of thinking follows these two assumptions:
- There is one “right,” “normal,” or “healthy” way for human brains and human minds to be configured and to function (or one relatively narrow “normal” range into which the configuration and functioning of human brains and minds ought to fall).
- If your neurological configuration and functioning (and, as a result, your ways of thinking and behaving) > substantially from the dominant standard of “normal,” then there is Something Wrong With You.
Robert Chapman furthers this argument by connecting the pathology paradigm to the history of capitalism and calling it the Empire of Normality:
This new apparatus, made up of a complex nexus of different carceral systems, legal precedents, institutions, concepts, and practices, led to populations beginning to be systematically ranked in terms of mental and neurological ability, while positing this as part of a timeless natural order. This was not an accident, but was rather built into the logics of capitalism from the beginning.
He borrows this idea from Lennard J. Davis's Enforcing Normalcy: Disability, Deafness, and the Body, which notes that disabilities don't emerge as disabilities until the assumption of a normal body is formed:
I do this because the "problem" is not the person with disabilities; the problem is the way that normalcy is constructed to create the "problem" of the disabled person.
Both Chapman and Davis trace the construction of normality to the rise of statistics and Adolphe Quetelet's "radical new science of human normality". As Quetelet writes (cited in Chapman's book):
the weight and stature of a man may be measured directly, and we may afterwards compare them with the weight and stature of another man. In comparing the different men of a nation in this manner, we arrive at average values, which are the weight and stature proper to be assigned to the average man.
Quetelet idealized the average person, but it was the eugenicist Francis Galton who demanded that people go beyond the average. Galton further revolutionized statistics, and the language of statistics is appropriated for everyday use, including the medical sciences. While this has allowed for genuine life-saving innovations and better health, the adoption of the normal body into the sciences means that everyone is compared to this imaginary ideal, despite the existence of biased indexes like Quetelet's BMI, which was derived from measurements of the Scottish Highland soldiers and the French gendarmerie. Not everyone is Scottish from what I understand.
Nevertheless, this empire of normality, this pathology paradigm has become a mainstay of our language. The "normal" brain (and body) is the result of capitalist relations, and we are all compared to it. As capitalism matures, more and more requirements for being "normal" are introduced; people now have to learn how to use computers, process flashing images and loud sounds, drive cars, and so on. Becoming "normal" will become increasingly difficult as time goes on. Anyone who can't adapt to the fast pace of late capitalism will be pathologized as "abnormal," disabled, and weak. And given that therapies like Applied Behavior Analysis (a closely related sibling to gay conversion therapy since they share a pioneer: Ole Ivar Lovaas) literally punish autistic people to become normal, normality is a deeply violent project that will keep on expanding until we choose to end it.
I think of my mother who is not disabled in the sense that we are talking about, but she could be if she was a teenager today. A few months ago, I had to help my second sister renew her digital passport in Singapore because she had misplaced her password and accidentally uninstalled the app. Without access, she cannot enter the country or use its services. It's especially worrisome as the country begins to incorporate more and more everyday activities into this application (privacy concerns notwithstanding!).
While the social model of disability based on the ideas of UPIAS and coined by Mike Oliver in The Politics of Disablement is not perfect, it is a useful "attempt to switch the focus away from the functional limitations of individuals with an impairment on to the problems caused by disabling environments, barriers and cultures." From mandatory use of smartphone apps to a lack of subtitles in movies to stairs that are simply everywhere for no good reason, people who can otherwise get on with their lives often find themselves disabled by the way society ignores their existence.
In the case of autism, people, including autistic people, have described it as a disability in some circumstances and not in others, or have denied the claim altogether. In the acknowledgments section of Asperger's Children: The Origins of Autism in Nazi Vienna, the author's early-diagnosed son, to whom the book is dedicated, argues that autism is simply a stereotype. The distress he feels comes from how people talk about it, and he wishes the label to go away. I've also read a couple of threads on Reddit describing their disgust with Devon Price and others who are okay with self-diagnosis because they've seen what happened to the psychiatric label of homosexuality and they could lose their benefits.
While it's not my place to say that people are wrong to think this way, I do think that autism, neurodiversity, and the discourses around it are politically useful and allow people to find support. While I'm not sure that terms like autism can ever be properly defined, I do know that they can create robust networks of solidarity. My partner, as they struggle to read these books, says it's empowering to realize that these stigmas are not eternal; they have a history in which they begin and therefore must necessarily end if we are to strive for change. A pathology paradigm can be overturned for a more neurodiverse paradigm.
This requires a change in the way we think about neurological difference. Not only must we abandon the need to conform to "normality," but we must also learn to value difference and allow it to manifest in political identities worthy of attention. To do this, we have to go beyond capitalism, psychiatry and welfare. All of this excited me because I felt like I was imagining a new world in my mind, and I began to see the problems with our world more clearly.
These works I'm thinking with have also provided some important vocabulary to explain what I find interesting in fiction. For example, in Bocchi the Rock, the titular protagonist is a withdrawn introvert who doesn't feel accepted in mainstream society, but finds a support group (i.e. the band) that allows her to blossom. It's also telling that a character like Hiroi, who sees herself in Bocchi, is also a mentor figure of sorts, and the PA famously declares that she's a dropout. The group dynamics in the work present an alternative conception of kinship networks, re-imagining "failed" people as people looking for groups that will accept them. They don't fit the standard Japanese nuclear family structure, but they are perhaps more alive than anyone else.
Can Bocchi be read as a possible sketch of a neurodiverse kinship network? I think so.
It's why I've been reading, discussing with friends, and now writing about this. I believe in this neurodiversity project and want to be an active accomplice. I hope this introductory article will interest people enough to consider this new critical way of thinking, because what I hope to do is draw connections between neurodiversity and the alienation explored in Japanese subculture media.
Below is an annotated bibliography of what I read before writing this post, and my honest thoughts about the work. It's organized in the way I'd probably recommend to my partner who's interested in reading again. It's probably exhaustive for that purpose, but note that I'm also missing a lot of important literature. I've highlighted works that have helped me a lot to understand neurodiversity and mental health (highlighted as "important").
If you want more autistic-related literature, check out The Autistic Advocate.
Introductory Reads
Hare, Jodie (2024). Autism is Not a Disease: The Politics of Neurodiversity.
This is a short manifesto that works well as an overview of current trends in neurodiversity writing. My partner and I attended a panel with her and she seems pretty cool. The book was originally longer, but she decided to cut it down to 160 pages instead. This means the writing can be somewhat cursory. I find myself wishing for more (a complaint shared by Beauty Dhlamini writing for Red Pepper). Nevertheless, I think it does a very good job at introducing more advanced texts like Empire of Normality to a layman audience and gives some great recommendations for further readings. Not bad for a first read.
Price, Devon (2022). Unmasking Autism: The Power of Embracing Our Hidden Neurodiversity.
More a self-improvement book than anything recommended so far, this is one of the two books often recommended to autistic people on mainstream autism subreddits. The first half of the book explores why masking exists and how it makes autistic people exhausted. There's a few exercises sprinkled here and there. My partner found them powerful enough to reflect on how they behave in society.
It's a nice book to read, but it seems to struggle with navigating the tensions behind unmasking. For example, it addresses how black autistic people might be pressured to unmask because of police and racial violence. While it's nice to see racism acknowledged, the book also acknowledges that unmasking is not a practical reality for everyone. I would have liked to see the book explore that more. This negative review on Goodreads is a reasonable discussion on the book's flaws and strengths.
Fortunately, there will be a sequel to this book in 2025, and I'm looking forward to reading it with my partner.
Walker, Nick (2021). Neuroqueer Heresies.
A compilation of foundational blog posts on neurodiversity available on the web, this book exists as a textbook for Walker's classes in university. If you are a stickler for citations, this book is a necessary purchase (it is sometimes free on Kindle). Many of these essays are available to read on Walker's website, and they are all worth reading.
Unfortunately, if you are interested in neuroqueering, there is a very good book-only essay at the very end that many neuroqueering articles use as a starting point. I do like the essay a lot, but I wish it was available on the web to link.
Frazer-Carroll, Micha (2023). Mad World: The Politics of Mental Health. (recommended)
Before reading this work, I was always surprised by the proclamations of activists who call themselves Mad. It's one of those words I thought would never be reclaimed. But as I read on, I began to see where it came from: people have tried to write about mental health in more euphemistic language, as if the only way to avoid stigma is to pretend it doesn't exist.
Rather than shying away from this narrative, Mad World declares mental health is about madness and we should take it as a political issue instead of some apolitical wellness issue. I found the chapters critiquing the vapidity of mental health campaigns and exploring radical psychiatry and alternative care services, including support workers helping patients fight landlords. Reading about Franco Basaglia and democratic psychiatry in particular made me think that the way we think about mental health and madness is too narrow, too neoliberal, to encompass all the mental problems out there.
I also recommend the Death Panel episode (transcript available) if you're interested in learning more about the book.
Silberman, Steve (2015). Neurotribes: The Legacy of Autism and the Future of Neurodiversity.
This is the other book that gets recommended all the time, and it's easy to see why: Silberman has written an accessible, in-depth history of autism diagnoses and neurodiversity for the general public.
The book is really a series of biographies that have been joined together to create a narrative that people are beginning to appreciate neurodiversity, despite the many setbacks. His writing is vibrant, and we can get a sliver of the personalities of each character he writes about. He has a knack on humanizing people in history, especially parents who have been swept away by anti-vaccine conspiracy theories, while acknowledging these people have done harm.
But what makes this book work is also its biggest flaw: there are heroes and villains in this story of autism. While villains like Ole Ivar Lovaas are rightly vilified for their actions, the heroes, especially Hans Asperger, receive little criticism, except perhaps for the innocent crime of creating new dilemmas for future doctors to unravel. While people rightly point out that Silberman wrote before more convincing evidence of Asperger's collusion with Nazi Vienna emerged, it is still a reductive narrative, clearly designed to make it an easier, more palatable read for the general public. I suspect that this heroes-and-villains story is the main reason people love this book.
Nevertheless, it remains a classic and is recommended by many autism activists and historians. I particularly enjoy the last few chapters that discuss the rise of the autism self-advocacy movement, including a mini-biography of Jim Sinclair and their magisterial essay "Don't Mourn For Us". I'm only putting this book last in this section because it's best to read it if you've read several books on autism and mental health before, so you know which parts are dated.
Denser Reads
Sheffer, Edith (2018). Asperger's Children: The Origins of Autism in Nazi Vienna.
Not only does this work as a corrective to Silberman's hagiography of Hans Asperger, but it also paints a picture of how psychiatric power came to be in Nazi Vienna. There's something chilling about how Red Vienna, led by Freudian psychoanalysts, could easily become Nazi Vienna once they purged Jewish and Communist sympathizers because they share in common eugenics ideals.
The book acknowledges that Asperger may not have killed children, but the way he diagnosed children he did not like (especially girls) and sent them to clinics and wards known to kill them implicated him and others in this murderous "diagnostic regime". Diagnoses like autism were not meant to help children, but to promote and conform to Nazi ideals.
As EC Maher writes for Disability Studies Quarterly, "This is not a book about autism, it is a book about scientific discourse in Nazi Vienna and the role of diagnosis in the Third Reich. Sheffer is as interested in what Asperger's work can tell us about understandings of community and issues of complicity under Nazism as she is in how Nazi ideology shaped Asperger's definition of autism."
Sedgwick, Peter (1982). Psychopolitics.
This book explores four prominent thinkers associated with antipsychiatry: Erving Goffman, R.D. Laing, Michel Foucault, and Thomas Szasz. These thinkers are celebrated in leftist movements for their critiques on psychiatry, but as Sedgwick explains, their criticisms (with the exception of Foucault) are not as liberatory as their writings claim to be.
For example, Sedgwick points out that illnesses are political and social concepts that describe deviancy. "In stressing the value-laden-ness of medicine," Mark Cresswell and Helen Spandler write in assessing Sedgwick's legacy, "it is not his intention to disregard its scientific credentials. At the same time, in subsuming a diagnosis of ‘schizophrenia’ within the ‘illness framework’, neither is he endorsing psychiatry’s epistemological claims. Sedgwick is pro-medicine precisely to the extent that he envisages a radically socialised medicine applicable equally to physical and mental health." Simply put, he believes that there should be no difference between the diagnosis of diabetes and schizophrenia, yet the former is treated as a value-neutral "scientific" classification while the latter is embedded in the social category of "deviance". He criticizes this tradition of looking at illness, which he calls "psycho-medical dualism": it allows the artificial separation of "physical" from "mental" illness, which gives anti-psychiatrist writers like Szasz permission to deny the existence of mental illness.
Without the concept of mental illness, the suffering experienced by many people is simply relegated to "problems in living"; therefore, he argues, mental illness should be included in the rallying cry of illness to make political demands on health services and politicians. The rest of the book is him dissecting the biographies of each thinker to show how problematic their foundations are and why the left should take mental health seriously.
This book was great to read, but I also recognize that it's more of a niche read if you're not interested in the history of (anti)psychiatry. The ideas in this book are echoed in works like Empire of Normality, so it's not a must-read. However, if you find the ideas interesting, it's worth picking up a copy.
Chapman, Robert (2023). Empire of Normality: Neurodiversity and Capitalism. (recommended)
This is the book that started my journey into neurodiversity and mental health. It is an attempt to create a historical narrative of how the pathology paradigm and ideas of normalcy came to manifest alongside capitalism, and I'm still trying to digest its ideas.
It charts how health in the ancient world was hijacked by the obsession of statisticians and eugenicists with normalcy in human populations. Chapters include a discussion on Quetelet's obsession with the "average man". This "empire of normality" reverberates in our thinking: even Marx uses notions like the "average worker" to discuss poor working conditions.
The recent rise of neoliberalism is also not only the rise of multinational corporations, but also a "mass disabling event" for workers. Disabilities are becoming more pronounced as capitalism demands more and more specific skills like being able to manage one's emotions for customer service work. Indeed, "traits that were previously relatively benign became associated with some level of disablement," writes Chapman, "while traits that have only been minimally disabling became significantly so." Not everyone can do service work, but there is an expectation that everyone should be able to do it.
As a result, Chapman argues that we must think beyond normality. Rather than finding ways to integrate disabled people into the workforce through diversity programs, their historical research argues that neurodivergent workers should organize "as neurodivergents to radically change the structures and expectations of the workplace". The facade of neuro-inclusivity must be rejected because what is really needed is liberation. So, people need to see not only patriarchy and racial capitalism as major issues of our time, but also the hegemony of neuronormativity: how we need to be conformed to be "normal" workers.
We need to imagine a neurodivergent communism where everyone's needs are met and neurodivergence is not a resource to be exploited but a class of active, thinking people. As Gerald Roche writes in Red Pepper, "In such a world, there would still be autistic people, but we would no longer be disabled. To me, that’s a world worth fighting for." It's a powerful book that, while I don't share Chapman's exploration on alienation, is winning me over as time passes.
Russell, Marta (2019). Rosenthal, Keith (ed.) Capitalism and Disability: Selected Writings by Marta Russell. (recommended)
If there are writers who deserve more recognition, Marta Russell should be in the top five. Her writing combines Marxism and disability theory in surprising ways. For example, her critique of the social model of disability is that it doesn't go far enough; instead, she advocates a model money of disablement, showing how disabled people are not unproductive burdens on society, as one might imagine, but can be made useful for capitalism. How? By putting these disabled bodies in nursing home beds.
There are whole industries based on housing and caring for disabled people, so capitalism has found ways to profit even from people who can't work. To understand why disability persists and why society is so disabling, Russell argues that political and economic dimensions must be included in the analysis. I read this a few years ago, and her writings are still a vital part of how I understand disability. Other writers in this bibliography have also used her provocative writing, so she deserves a mention in this list.
Adler-Bolton has written a decent overview on her writing, and the Law & Political Economy symposium is also worth reading.
Adler-Bolton, Beatrice and Vierkant, Artie (2022). Health Communism: A Surplus Manifesto.
Written by the Death Panel cohosts, this book argues that while not everyone is ill right now, no one can be truly well under capitalism. It proposes many interesting ideas, including conceiving health as a bio-fascist project and the notion of "extractive abandonment": capitalism extracts as much value as it can from workers before abandoning them to their demise.
The book also has a historical chapter devoted to the Socialist Patients' Collective. In some ways, it is a deeper and more philosophically robust version of its sequel, Mad World. I won't deny the book is difficult to read, but the ideas explored are engaging, and I've come back to their arguments when reading books that bring Health Communism up. And as I read other books, I also began to understand that what I found difficult came from not being able to imagine the world that Health Communism wants.
This has become a favorite of mine because it's so thought-provoking, but I also admit that it takes a lot of further reading and contemplation to understand where the book is going. But once you understand its arguments and why it wants us to look at different kinds of care, it makes living under this health capitalism unbearable at best.
SPK: Turn Illness into a Weapon (1972).
If you are interested in reading what the Socialist Patients' Collective is all about after reading texts like Health Communism, this is a short manifesto explaining their history and theses, including "illness is the presupposition and the result of capitalist relations of production." It argues that illness, as the "only form of 'life' under capitalism", is also a "revolutionary productive force for humans" and mimics the movement of capital transforming "living work into dead material". Fun read if you want some short theory.
Davis, Lennard (1995). Enforcing Normalcy: Disability, Deafness, and the Body.
This book is all over the place. Written by a child of Deaf parents, it provides a lot of the theoretical foundations on normality for books like Empire of Normality. If you find Chapman's exploration of Quetelet's statistics and his idealization of the average man interesting, this is worth reading.
Otherwise, the book is full of language and antiquated ideas we don't use today: Davis argues that we should use "people with disabilities" instead of "disabled people" because it helps us dissociate disability from people. Still, there are sections where I thought his privileging of sound and touch over sight as a methodological move made me think of Jacques Derrida's concern about how we privilege presence over non-presence.
I'm only including this text in the list just because the differences between Chapman and Davis are interesting.
Yergeau, M. Remi (2017). Authoring Autism: On Rhetoric and Neurological Queerness. (recommended)
This book is without a doubt the most difficult book I've read on this list. It touches on areas I'm not familiar with (especially rhetoric). Despite this, and perhaps because of it, I found it an invigorating read. Using Walker's neuroqueer theory, Yergeau analyzes and dismantles how academics currently conceptualize autism as people without a theory of mind.
Autistic people are seen by academics (and parents) as people who perform gestures without agency, therefore they must always be infantilized to fit their narratives. Cruel, dehumanizing quotes are scattered throughout the book, including writings by practitioners of Applied Behavior Analysis and Simon Baron-Cohen (the scientist who proposed that autism is an "extreme male brain disorder"). For example, the everyday actions by neuroqueer people are not seen as actions; they are seen as uncontrollable actions. Stimming needs to be eliminated in this neuronormative regime. As Yergeau writes, "Practice is only practice when it is able, straightened, and compliant." When neuroqueer people, like queer people, don't behave according to neuronormative standards, they are not seen as being in control. While Asperger's Children is more horrifying to read, this book made me sick because ABA, a practice still okayed by states today, is basically conversion therapy to turn neuroqueer people into neuronormative people. What's particularly insidious is that ABA co-opts actual disability arguments, such as the social model of disability, to claim that autistic people are therefore disabled and need to be "corrected" into "normal" people.
But for ABA to work, there must be constant monitoring of the autistic individual's behavior, because no matter how "high functioning" they are, they cannot reach the neuronormative ideal -- what Yergeau describes as another variant of Zeno's tortoise and hare paradox, where the goalposts keep moving further and further away. There are also so-called treatments that use "aversives", which are just cruel punishments to make children behave: a child being dangled headfirst out of a fifth-story window, electric shock therapy is no different from Anne Sullivan's teaching methods to Helen Keller, etc. Many of these dehumanizing actions are "justified" because autism is seen as some kind of infantilizing disorder.
The book therefore argues that we need to think of neuroqueer practices like stimming as an alternative rhetoric, one that challenges the dominance of neuronormative rhetorics and notions of agency. Instead of parents and doctors "authoring" autism, it should be up to the people who identify as autistic to do just that. They know themselves best.
It's a complex, daunting book to read, but it's also one of the best academic works I've ever read. It's also quite funny, with the author betraying academic seriousness to add a thematic joke to make a salient point: if we take autistic rhetoric seriously, then we should allow their own unique writing style, not tacit guidelines for "proper" academic writing, to guide their methodology.
I'm still reading books in this vein, though lately I'm more interested in the history of madness and psychiatry. If there are any books, essays, or videos that you find interesting and relevant, let me know in the comments. I'm always interested in learning more about the neurodiversity movement.
I also plan to create a page dedicated to reading lists on the site. Let me know what you would like to see more of as well.