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Our emancipatory research efforts focus on the sweet spot of But, there is something sociology must do. It is our disciplinary imperative to understand societies. Just as communication studies understands forms of communication, sociology must understand the social. If we..., Neurodiversity is the diversity of human minds, the infinite variation in neurocognitive functioning within our species.NEURODIVERSITY: SOME BASIC TERMS & DEFINITIONS Neurodiversity is a biological fact. It’s not a perspective, an approach, a... studies, disability studies, and syncretism, in the open. We want to improve the scientific experience for the disabled and the neurodivergent by restoring the humanities. We want to bring voice into empirical constructs and translate voice into academic comprehension.
But in introducing me simultaneously to skepticism and to wonder, they taught me the two uneasily cohabiting modes of thought that are central to the scientific method.The Demon-Haunted World: Science as a Candle in the Dark
Science’s eye for detail, buttressed by philosophy’s broad view, makes for a kind of alembic, an antidote to both. This intellectual electrum cuts the cloying taste of idealist and propositional philosophy with the sharp nectar of fact yet softens the For me this space of radical openness is a margin a profound edge. Locating oneself there is difficult yet necessary. It is not a “safe” place. One is always at... of a technoscience that has arguably lost both its moral and its epistemological compass, the result in part of its being funded by governments and corporations whose relationship to the search for Justice, equality, fairness, mercy, longsuffering, Work, Passion, knowledge, and above all else, Truth. Those are my primary emotions.Very Grand Emotions: How Autistics and Neurotypicals Experience Emotions Differently » NeuroClastic https://youtu.be/uPRa6G2a48E... and its open dissemination can be considered problematic at best.
…the passive voice, “objective” stance, anonymity, and depersonalization of the scientist and journalist betray the fundamental phenomenological reality that each of us has a specific perspective. All observations are made from distinct places and times, and in science no less than art or philosophy by particular individuals.Cosmic Apprentice: Dispatches from the Edges of Science
Science + Philosophy
Skepticism + Wonder
Empiricism + Voice
Bio + Psycho + Social
Body + Mind
Bodymind: A term used to challenge the idea the body and mind are experienced separately (Descartes). Written in various ways, Bodymind or Body-mind, this usage foregrounds the understanding that experiences...
- Stop, Hammer Time
- Get a Dose of Social Science
- Confirm Autistic Common Knowledge
- Change Your Language
- Science Is Not Static: Reframe
- Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools
- The Medical Model Is Essentially Individualist
- Shift the Discourse: Toward a Biopsychosocial Model
- Say You’re Sorry
- Check Your Gaze
- Check Your Neurocentrism
- Questions for an Industry: Are You Disregarding Harm and Profiting From Our Misery?
To Autistic ways of being are human neurological variants that can not be understood without the social model of disability.If you are wondering whether you are Autistic, spend time amongst Autistic people, online and offline. If... industry professionals perpetuating a broken status quo,
Stop, Hammer Time
It’s not Science vs Philosophy … It’s Science + Philosophy. When you measure include the measurer.MC Hammer
I would insist on the embodied nature of all vision and so reclaim the sensory system that has been used to signify a leap out of the marked body and into a conquering gaze from nowhere. This is the gaze that mythically inscribes all the marked bodies, that makes the un-marked category claim the The 20th Century political scientist Karl Deutsch said, “Power is the ability not to have to learn.”I quote this statement often, because I think it’s one of the most important... to see and not be seen, to represent while escaping representation.Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective
Get a Dose of Social Science
Scientists are increasingly recognizing a moral imperative to collaborate with the What I have always been hoping to accomplish is the creation of community.Community is magic. Community is power. Community is resistance.Disability Visibility: First-Person Stories from the Twenty-First Century https://www.amazon.com/Disability-Visibility-First-Person-Stories-Twenty-First-ebook/dp/B082ZQBL98/ https://www.amazon.com/Disability-Visibility-Adapted-Young-Adults-ebook/dp/B08VFT4R9T/... they study, and the practical benefits that result. Autism researchers are joining this movement, partnering with people on the spectrum and their families to better address their priorities.Autism research needs a dose of social science | Spectrum | Autism Research News
Disrupting Dis/abilization: A Critical Exploration of Research Methods to Combat White Supremacy and Ableism in Education
Frontiers | Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production | Psychology
Soft domination, hold me Rule me captive, drain me empty And I need you to know me So no one else owns me Tell me you'll lift me up Tell me you'll take me out of this place Tell me you'll lift me up Tell me you'll take me out of this place --Soft Domination by Screaming Females
Confirm Autistic Common Knowledge
Formal confirmation of autistic common knowledge is exactly the kind of research we need out there. I am so happy when an academic paper states the obvious (at least obvious to us autistics) because it means there is finally an information source that “the system” will respect. Do I wish people would actually listen to actual autistics? Most definitely, I do. But until we manage to shift that Overton window halfway across the wall, I rejoice to see our actual life experiences written about accurately in scientific journals.
I was especially thrilled There are three types of reading: eye reading, ear reading, and finger reading.The Dyslexia Empowerment Plan: A Blueprint for Renewing Your Child's Confidence and Love of Learning Most schools and... Rebecca Wood’s research, recently published in the journal Educational Review. In her article, “The wrong kind of noise: understanding and valuing the communication of autistic children in schools,” Woods uncovers something we autistic adults have been complaining about for so long: We are not “allowed” to do the same things non-autistic children do. They are allowed to be so loud we cannot bear to be in the same lunchroom with them, but we are silenced if we are even a fraction as loud as the non-autistic people.In Silence and in Sound: Autistics Do Not Benefit From Presumptions of Deficit — THINKING PERSON’S GUIDE TO AUTISM
This makes seemingly benign noises a threat to my well-being and quite possibly real physical danger to my physiology.Autistic Traits and Experiences in “Love and Mercy” The Brian Wilson Story – The Peripheral Minds of Autism
Needless to say, the dining hall, as well as being busy, crowded and a source of multiple odours, was also very noisy, as trays were picked up and clattered back down, cutlery jangled, and metal serving dishes clanged against metal hot plates. Meanwhile, the children, squeezed into rows of tiny seats bolted on to collapsible dining tables, grew louder and louder to make themselves heard over the racket. Indeed, the lunch queue Aloneness is a characteristic that many creatives embrace and yearn for. Being alone is anything but lonely. Reading, writing, and creating art all demand a personal space where one can... can be the place where sensory problems ‘can turn into a nightmare’ (Sainsbury 2009, p.99). Perhaps unsurprisingly, therefore, all of the child contributors to this book – Grace, James, Rose and Zack – identified noise and crowds as being the most difficult aspects of school from a sensory point of view.
Indeed, the school environment can present autistic children with a multi-sensory onslaught in terms of sounds, smells, textures and visual impacts that constitutes both a distraction and a source of discomfort (Ashburner, Ziviani and Rodger 2008; Caldwell 2008). There was also clear evidence from my own study that sensory issues, and noise in particular, can be highly exclusionary factors for autistic children in schools.Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom
Change the circumstances. Confirm autistic common knowledge.
The number of autistic young people who stop attending mainstream schools appears to be rising.
My research suggests these absent pupils are not rejecting learning but rejecting a setting that makes it impossible for them to learn.
We need to change the circumstances.Walk in My Shoes – The Donaldson Trust
Change Your Language
“The Racist History of Race Science” from the Union of Concerned Scientists reminds us here at Stimpunks of the similarities between race science and the autism industry.
The mainstream of autism studies is stuck in the Eugenics is the scientifically inaccurate theory that humans can be improved through selective breeding of populations.Eugenics is an inaccurate theory linked to historical and present-day forms of discrimination, racism, ableism and... and ableism of the 1940s and has aged as well as race science, which is to say, very badly. Many autism studies coming out today are ignorant and vile in their ableism like the race studies of old were in their racism. They are sickening to read. They read like bigotry, because they are bigotry. They steal the credibility of science to rationalize and exploit prior bigotries.
Autism research is incredibly flawed in an enormous number of ways. One example of how, is the fact that the sum total of all knowledge of Autism in academia is based on the work of two incredibly flawed men, both with incredibly flawed ideas and practice from the 1940s. Everything we know professionally and societally about Autism is underpinned by their work. As I’ve said so many times in talks and trainings the whole of Autism research is built on a foundation of sand.Autistic Masking: Kieran Rose a new Academic Paper
A friend of Stimpunks working on experiments related to autism representation lamented the state of the field in correspondence.
Similarly, the author of “Interrogating Normal was created, not discovered, by flawed, eccentric, self-interested, racist, ableist, homophobic, sexist humans. Normal is a statistical fiction, nothing less. Knowing this is the first step toward reclaiming your...”:
Perspectives that lack knowledge are often dangerously misinformed.
You would think that would be a pretty obvious statement and perhaps you might think that there are certain contexts where that should be a mantra imprinted in the brains of everyone involved.
Naively, when I was much younger, less knowledgeable about myself and much less worldly-wise, I used to think that Autism Research would be one of those contexts.
How wrong I was and how terrifying it is when I look around and see so many Autistic people invested in Autism research like it’s written in the holy scripture of [insert religion here].
As I’ve said so many times in talks and trainings the whole of Autism research is built on a foundation of sand.
Why is it a foundation of sand? Well, right from day one the When we successfully reframe public discourse, we change the way the public sees the world. We change what counts as common sense. Because language activates frames, new language is required... of Autism research has been this:
- Expert’ looks at Autistic person (usually child; usually white child; usually white boy child; usually white boy child that presents in a particular way).
- ‘Expert’ takes notes.
- ‘Expert’ forms opinion.
- ‘Expert’ writes it up.
- Another ‘expert’ nods wisely.
- ‘Expert’ publishes.
- ‘Experts’ applaud ‘Experts’.
- Whole world believes ‘Expert’.
- Services are developed around ‘Expert’ knowledge.
The tyranny of the Normal was created, not discovered, by flawed, eccentric, self-interested, racist, ableist, homophobic, sexist humans. Normal is a statistical fiction, nothing less. Knowing this is the first step toward reclaiming your..., thoroughly institutionalized and instrumented against us:
This ableism follows a long tradition of devaluation of The label "disabled" means so much to me. It means I have community. It means I have rights. It means I can be proud. It means I can affirm myself... people in regard to their deviations from the norm. As educator Thomas Hehir (2002) writes,
ableism uncritically asserts that it is better for a child to walk than roll, speak than sign, read print than Braille, spell independently that use spell-check, and hang out with non- disabled kids as opposed to other disabled kids, etc. In short, in the eyes of many educators and society, it is preferable for disabled students to do things in the same manner as nondisabled kids (p. 3).
In nearly all media accounts, and throughout much of the research literature, autistic functioning is portrayed in thoroughly ableist terms as a medicalized deficit that requires extensive correction. For many autistic toddlers and young children, the requirement to do things in the same manner as non-autistic kids often means that months and years are spent in some form of intensive behavioral training meant specifically to make them appear less autistic. Educator Lennard Davis (2010) calls the ableist enforcement of normality onto the bodies and minds of disabled people “the tyranny of the norm,” (p. 6) and states that “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” (p. 3).
This problem-focused and medicalized approach to autism, which is devoid of autistic voices and autistic agency, leads to treatments, therapies, and educational approaches that do not respect the humanity, autonomy, or dignity of autistic people – and this is especially true for many of the treatments that are focused on autistic toddlers and young children.Interrogating Normal: Autism Social Skills Training at the Margins of a Social Fiction
I wish you could know What it means to be me Can you see You’d agree Everybody Should be free (Because if we ain’t, we’re murderers) --I Wish I Knew How It Would Feel To Be Free by Nina Simone
One of the most Everything that was normally supposed to be hidden was brought to the front.Punk subculture - Wikipedia The First Rule of Punk: Be Yourself Our Second Rule of Punk: Reframe The... angst people in history is Nina Simone.AFROPUNK: The Movie
She was Neurodivergent, sometimes abbreviated as ND, means having a mind that functions in ways which diverge significantly from the dominant societal standards of “normal.”NEURODIVERSITY: SOME BASIC TERMS & DEFINITIONS Neurodivergent is quite... and did her best work as an activist completely unaware she was I call it burning these days because that’s what it feels like: like there’s an idea inside me burning its way out. But when I was younger, I called it... and suffering from When something happens which makes us feel unsafe, our brains respond by going into survival mode. Your brain sees something frightening, feels you are in life threatening danger and it.... As such, the disability community should embrace her as a savant in the wider sphere of neurodivergent people who demonstrate talent usually limited to the label autistic savant.Nina Simone: Black Activist, Bipolar Savant | NOS Magazine
I sing from intelligence. I sing from letting them know that I know who they are and what they have done to my people around the world.
That’s not anger. Anger has its place. Anger has fire, and fire moves things, but I sing from intelligence. I don’t want them to think that I don’t know who they are.Nina Simone on BBC HARDtalk, 1999
Science Is Not Static: Reframe
Since its initial description, the concept of autism has been firmly rooted within the conventional medical paradigm of child psychiatry. Increasingly, there have been calls from the autistic community and, more recently, nonautistic researchers, to rethink the way in which autism science is When we successfully reframe public discourse, we change the way the public sees the world. We change what counts as common sense. Because language activates frames, new language is required... and conducted. Neurodiversity, where autism is seen as one form of variation within a diversity of minds, has been proposed as a potential alternative paradigm. In this review, we concentrate on three major challenges to the conventional medical paradigm – an overfocus on deficits, an emphasis on the individual as opposed to their broader context and a narrowness of perspective – each of which necessarily constrains what we can know about autism and how we are able to know it. We then outline the ways in which fundamental elements of the neurodiversity paradigm can potentially help researchers respond to the medical model’s limitations. We conclude by considering the implications of a shift towards the neurodiversity paradigm for autism science.Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science
Science is not static. As Thomas Kuhn (1962) explained, science progresses through a series of phases from what Kuhn called ‘normal science’ – the accepted orthodoxy of the moment – to periods of crisis, when scientists begin to contest the hitherto-accepted paradigm itself. This period ends, ultimately, in a shift from one paradigm to another. In the field of autism science, the conventional medical paradigm is – and has long been – the accepted orthodoxy in this field, conceptualising autism in terms of biologically derived functional deficits, and thus placing limits or boundaries on what we can know about autism and how we are able to know it (Kuhn, 1962). The vast majority of autism researchers have been trained to understand autism as a disorder of brain development, an undesirable deviation from the norm.
In what follows below, we proceed in two major sections. First, we outline the major ways in which the conventional medical paradigm is being called into question. Second, we outline the fundamental elements of the alternative view, the neurodiversity paradigm. We briefly trace its history, describe its core tenets and ask whether the neurodiversity paradigm could potentially overcome the challenges faced by its medical counterpart. We then conclude by considering the implications of a shift towards the neurodiversity paradigm for autism science.Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science
If you loved me I wouldn't have to run away I wouldn't have to hide away Through this life If I could transform And change the way I am right now I'd be Exactly what you want to see If you loved me I wouldn't have to be sad I could smile and you'd be glad That I'm from this life If I could transform I wouldn't have to be afraid I wouldn't have to be unmade From this life I don't want special treatment I don't want attention I just want to coexist On the realm that you There is nothing more human than play. Humans were designed to learn in play. In fact, nearly all mammals evolved this way.Play's Power At our learning space, we provide learners fresh... on Open up your heart Take me as I am Love me, hate me, break my heart Just let me live
Well, if you loved me I wouldn't have to be sad I could smile and you'd be glad That I'm from this life (If I could) Transform And I don't have to be afraid I wouldn't have to be unmade From this life Life Well, if you loved me I wouldn't have to be sad I could smile and you'd be glad That I'm from this life If I could transform I wouldn't have to be afraid I wouldn't have to be unmade From this life Life! Transform!
Give yourself a combo plate (Combo plate) Transform Transform, transform, everybody transform If we could transform We wouldn't have to be afraid We wouldn't have to be unmade From this life If we could transform And change the way we are right now It'd be Much, much, too easy Can you take those thoughts away? Can't you see I'm fine? Warm your heart, don't you see It's just the same as mine? Am I naive? --Transform by Steam Powered Giraffe
Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools
The growing presence of autistic people in autism research—as participants, advisors, and (co)researchers—has brought about changes in the quality and relevance of autism research. We are seeing more studies by autistic autism researchers, more studies on issues of importance to autistic people, and more studies utilizing methodologies that resonate with autistic people. However, there remains a reliance on measures that are technically ‘‘valid’’ and ‘‘reliable’’ rather than relevant. As long as this is the case, we will continue to see studies published that ‘‘explain autism’’ in ways that do not reflect autistic experiences. Autism research is still making incremental changes and it is time for a paradigm shift.Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools | Autism in Adulthood
Research into the experiences of autistic people is used to inform policy, practice, and community understanding. It is important that autism research respects and reflects autistic voices. Current research often uses scientific in- struments that are not consistent with our lived experience of autism.
This article explains why the current approach to research—encouraging the use of existing measures and incre- mental change—is harmful to autism research and to autistic people. It provides examples of commonly used tools and explains why they are problematic. The article aims at encouraging a discussion into why the findings of autism research are often inconsistent with the experiences of autistic people.
Academic journals aim at publishing papers that present the best and most accurate research projects. Researchers are encouraged to use tools that have been developed and tested in previous studies, because these are considered to be ‘‘reliable’’ (consistent) and ‘‘valid’’ (accurate). Researchers are discouraged from developing new measures or making major changes to existing ones. So, it can be hard to publish community-driven research that uses tools developed by autistic people.
I recommend that autism researchers ensure that the tools they use to study autism actually measure the experiences of autistic people. I also recommend that we stop relying on existing measures that do not make sense to autistic people and work with autistic people to develop better tools.
These recommendations will help autistic adults by making autism research more relevant and useful. Research that reflects our actual experiences will improve community understanding of autism. It will also lead to better policies and practices that meet the needs and aspirations of autistic people.
Despite numerous calls for the inclusion of autistic people as collaborators and co-researchers, we are still measuring important aspects of autistic lives by using instruments developed by non-autistic people. It is not enough to make minor modifications to existing instruments so that we continue to ‘‘reliably’’ and ‘‘validly’’ measure the wrong things.
We have seen a number of paradigm shifts in the way we understand autism. We now know that autism is not a childhood condition, is not caused by refrigerator mothers, is neurodiversity not disease, and is prevalent (but under- diagnosed) in females.
It is time for a paradigm shift in the way we research autism. Rather than continuing to conduct research by making incremental changes to existing measures that misunderstand and misrepresent autistic people, we need to critically explore the applicability of existing measures and develop new measures that accurately reflect autistic experiences.
If we are to utilize measures developed with The existence of the word neurotypical makes it possible to have conversations about topics like neurotypical privilege. Neurotypical is a word that allows us to talk about members of the... populations to assess autistic populations, we need to first conduct research to determine that they measure the phenomenon of interest in this population.
The refinement and development of these measures needs to be undertaken in genuine collaboration with autistic people—as project advisors, pilot testers, co-researchers, and acknowledged experts in their own experiences. First, we need to understand the concept we are aiming at measuring. This understanding can only come from incorporating deep and meaningful consultation with autistic people. How do we observe and experience societal attitudes? How do we achieve our need for repetitive behaviors within the confines of a predominantly neurotypical society?Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools | Autism in Adulthood
The Medical Model Is Essentially Individualist
This captures an aspect of accommodation models that really frustrate me. They encourage individualized responses to structural design problems. Instead of designing by default for proven needs well-known in disability and neurodiversity communities, Accommodation is fundamentally about not changing the person but changing the environment around the person.Normal Sucks: Author Jonathan Mooney on How Schools Fail Kids with Learning Differences Yet on a programmatic... models require individual episodes of Forced intimacy is a cornerstone of how ableism functions in an able bodied supremacist world. Disabled people are expected to “strip down” and “show all our cards” metaphorically in order..., repeated over and over and over for the We urgently need a society that's better at letting people get the rest they need.Fergus Murray WIP by Kristina Daniele I’m in pain. Mental. Physical. The result’s the same. Retreating... of your life. We should treat each episode of forced intimacy as a Compassion Isn't CoddlingPeople often mistake compassion for “being nice,” but it’s not.The point of compassion isn’t to soften bad news or stressful situations with niceties. It’s to come from a... that puts our designs to the test of Compassion Isn't CoddlingPeople often mistake compassion for “being nice,” but it’s not.The point of compassion isn’t to soften bad news or stressful situations with niceties. It’s to come from a....Accommodations: Individualized Responses to Structural Design Problems
Terzi (2005, p.446), for example, is of the view that the medical model as played out in educational environments results in ‘perspectives emphasising individual limitations’ rather than the ways in which the organisation and design of schools might create those very difficulties in the first instance.Wood, Rebecca. Inclusive Education for Autistic Children (p. 38). Jessica Kingsley Publishers. Kindle Edition.
You have the right to food money Providing of course you Don't mind a little Investigation, humiliation And if you cross your fingers Rehabilitation Know your rights These are your rights -- Know Your Rights
Shift the Discourse: Toward a Biopsychosocial Model
Neurodiversity at work: a biopsychosocial model and the impact on working adults | British Medical Bulletin | Oxford Academic
Hey, what have I got? Why am I alive, anyway? Yeah, what have I got Nobody can take away? Got my hair, got my head Got my brains, got my ears Got my eyes, got my nose Got my mouth, I got my smile I got my tongue, got my chin Got my neck, got my boobies Got my heart, got my soul Got my back, I got my sex I got my arms, got my hands Got my fingers, got my legs Got my feet, got my toes Got my liver, got my blood I’ve got life, I’ve got my freedom I’ve got life I’ve got the life And I’m going to keep it I’ve got the life --Ain’t Got No, I Got Life by Nina Simone
Say You’re Sorry
Take a step back, take one step back Take a step back and shave that pride off Take a second, open your mind Take a step back and stop this madness You say you taste the frozen sorrow Well we can feel your lack of información I see the hunger, hate and love It might not do us any good It cannot do us any good Small minds who feed suck the children to dirt It gives us shivers the way they shed blood Trying to forget but we can't much longer The sight of anger breaks small ginger hopes
Take a step back, take one step back Take a step back and shave that pride off Take a second, open your mind Take a step back and stop this madness Take a step back, take one step back Take a step back and shave that pride off Take a second, open your mind Take a step back and stop this madness And stop this madness Stop this madness
The bricks are grown makes this place much colder It give us shivers the way they shed snow Trying to forget, but we can′t much longer The sight of anger breaks small ginger hopes Old sores permit these scars to scare us senseless Makes my spine increase with sudden panic These problems started in our adolescence The size of your rage drowns my urge for loving
Check Your Gaze
The Fundamental Attribution Error is that we overestimate the power of the person and underestimate the power of the situation.Student Culture and Learning: What’s the Connection? Lee Ross defined FAE... (Fundamental Attribution Error) attitudes and the “conquering gaze from nowhere” are rife in our systems, particularly education and healthcare. They are often leveled by straight, white, abled, neurotypical bodyminds against all other bodyminds.
When students are tripped up by challenges, they may respond by tuning out, acting out, or dropping out. Often, however, they do so not because of a defect in their makeup (lack of stick-to-itiveness) but because of structural factors.Kohn, Alfie. The Myth of the Spoiled Child (p. 170). Hachette Books. Kindle Edition.
Lee Ross defined FAE as a tendency for people, when attributing the causes of behavior, “to underestimate the impact of situational factors and to overestimate the role of dispositional factors in controlling behaviour”. That insight is very aligned with neurodiversity and the In the broadest sense, the social model of disability is about nothing more complicated than a clear focus on the economic, environmental and cultural barriers encountered by people who are.... It’s at the heart of equity literacy, structural ideology vs. deficit ideology, designing for the edges, and changing our framing.
Special Education is a gauntlet of FAE attitudes. We are tired of wading through bad framing.
FAE and the conquering gaze exhaust marginalized students, patients, and employees. Check your FAE. Check your gaze.
I try my best to hide that I care That you got me wrong, yeah, you got me wrong Yeah, you got me wrong You really got me wrong, yeah, you got me wrong Yeah, you got me wrong I look around, the light hurts my eyes And I'm falling deeper and deeper into the void Yeah, I'm falling deeper and deeper into the void --Cubicle by Slothrust
Check Your Neurocentrism
When it comes to academic research, we presume that researchers are doing their best to be rigorous and objective, which includes avoiding bias. But when it comes to studies involving autistic subjects, are they?
We know that the way information is presented influences our judgement and decision-making: the framing effect. How we “When we successfully reframe public discourse, we change the way the public sees the world. We change what counts as common sense. Because language activates frames, new language is required...” information has an impact on how we treat it, and thus on outcomes. So if your research project is based on the assumption that your subjects have a disorder or a deficit, that presumption will be reflected in both your process and your results.
What we see in research involving autistic subjects is that autism is frequently framed as “non-neurotypical”, i.e. autistics are measured against people who are non-autistic and thus end up being defined by what they aren’t. For a comparison, imagine a linguistic study of a Swedish-speaking community by French academics where the conclusion is “they can’t speak French”. If ethnocentrism is judging another culture solely by the values and standards of one’s own culture, then what we often see in these papers is a kind of If ethnocentrism is judging another culture solely by the values and standards of one’s own culture, then what we often see in these papers is a kind of neurocentrism, judging..., judging another neurology by the capabilities and standards of one’s own neurology. Mottron and his research associate Michelle Dawson use the term “If ethnocentrism is judging another culture solely by the values and standards of one’s own culture, then what we often see in these papers is a kind of neurocentrism, judging...”: if a non-autistic person does something it’s normal, but if an autistic person does it, it’s abnormal.
It’s an understatement to say that there is a bias in autism studies. Autistic people are not being well-served by this research, if we’re being served at all. In the world of academia, strict procedures are in place to ensure that impartiality is maintained: conflict of interest declarations, rules on plagiarism and ethics, independent peer-review prior to publication etc. But many of these studies are biased towards autism as a deficiency and an incapability, which has a predictable impact on the outcomes.Autistics: less biased. Researchers?
Questions for an Industry: Are You Disregarding Harm and Profiting From Our Misery?
Continue for our questions to an industry, including, “Are you disregarding harm?”