Our emancipatory research efforts focus on the sweet spot of digital sociology, neurodiversity 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.

Science + Philosophy
Skepticism + Wonder
Empiricism + Voice
Bio + Psycho + Social
Body + Mind
Bodyminds

Maybe the words and ideas of love, belonging, safety, trust, beauty, joy and connection can belong in the academy. They are how we acquire knowledge, in all its forms. They are not hard science but they are humanity.

Emotions sometimes are banging on the doors at universities. Connection and love just need the door to be opened. It’s risky, it’s scary but it’ll make everything so much better. So much realer.

Radical research is not a neutral tool to be employed without bias in the search for truth. Rather the radical roots of research are focused on freedom and emancipation from unchallenged allegiance to tradition, ‘common sense’, religion, or powerful individuals and organisations.

Here’s to the radical researchers, activists, advocates and many others. The radical research participants, consultants and those who tell the academy to stick it.

Embracing Radical Research in Academia – Autistic and Living the Dream

To autism industry professionals perpetuating a broken status quo…

Those who see it as their place to do so, have tended to define humanness via a process of exclusion, rather than inclusion. Those who are excluded, and so dehumanised, are done so on the basis of what they supposedly lack: intelligence, rationality, self-determination, autonomy, individuality, integrity, subjectivity, sentiment, violability, morality, pain-sensitivity, and – relevant here – mentalising ability (Haslam 2006). Rhetoric to the effect that an out-group lacks any ability viewed as essential to humanity enables them be seen as subhuman, and, this can in turn promote prejudice and violence (Cassidy et al. 2017; Kassin et al. 2014).

Regarding the use of dehumanising rhetoric – The Autistic Advocate

This piece is the first of a four part series that confronts the harmful past and present of autism research and advocates for a better future.

• Facts, Fire, and Feels: Research-Storytelling from the Edges
• Questions for an Industry: Are You Disregarding Harm and Profiting From Our Misery?
• Participatory, Emancipatory, Activist Research
• Useful Autism Research: Welcome to This Very Important Update

Stop, Hammer Time

We can reject pseudoscience without becoming reductive about how minds work.

Einstein’s Beams and Feynman’s Colors: What We Lost When We Debunked Learning Styles | Punya Mishra’s Web

We can reject bad science without embracing bad philosophy—the reductive view that cognitive differences don’t matter.

Punya Mishra, Post | Feed | LinkedIn

Scientism and Epistemic Injustice

The state of autism research reminds many of us in neurodiversity and disability communities of this from Alfie Kohn.

The underpinnings of that ideology include: a focus only on observable behaviors that can be quantified, a reduction of wholes to parts, the assumption that everything people do can be explained as a quest for reinforcement, and the creation of methods for selectively reinforcing whichever behaviors are preferred by the person with the power. Behaviorists ignore, or actively dismiss, subjective experience – the perceptions, needs, values, and complex motives of the human beings who engage in behaviors.

Autism and Behaviorism – Alfie Kohn

Scientism

Autistic people see this sort of scientism over and over.

There are many ways for people to come to understand the world. Many different approaches to learning about things, including minds. Scientism — the belief that science is the only route to useful knowledge — is a philosophical mistake (Hughes 2012).

I say this as someone who loves science, who teaches it for a living and who’s in the middle of another science course right now, for general interest and with an eye to future research. Science is wonderful. We just need to be careful about how we apply it, and what ways of knowing we risk crowding out if we rely on it too heavily.

When it comes to autism, people sometimes rely on scientific studies to the point of disbelieving autistic people’s personal experiences. Despite the low quality of much of the published research on autism, non-autistic experts are assumed to understand autistic experiences better than the people having them. This is a serious problem in a number of ways, and also an interesting case study in the limitations of science.

Autism and Scientism, Research Journal Middletown Centre for Autism 

This is one of the heartbreaks about being autistic. We tend to love certainty and support science. Yet, we constantly face scientific and medical professionals whose credentials we want to trust but whose information has been greatly misinformed. It’s a systemic problem.

John Marble on Twitter

Epistemic Injustice

A fundamental problem with autism research is: Scientism begets epistemic injustice. The behaviorist bent of autism research repeatedly churns out therapies and theories that steal the credibility of science to rationalize and commodify ableism.

So much of the reason why borderline-abusive practices like ABA have been allowed to proliferate is that policy-makers have prioritised anything claiming to be scientific over the constant objections of the people having these things done to them.

Science is an incredibly powerful tool, but that just makes bad science all the more dangerous. No court would dismiss someone’s testimony of their own pain just because there are no peer-reviewed studies to show it’s real – so why do politicians?

@ferrous@neurodifferent.me

Epistemic injustice refers to harms that relate specifically to our status as epistemic agents, whereby our status as knowers, interpreters, and providers of information, is unduly diminished or stifled in a way that undermines the agent’s agency and dignity. 

Neurodiversity, epistemic injustice, and the good human life – Chapman – 2022 – Journal of Social Philosophy – Wiley Online Library

Measuring the Surface, Badly

Much of mainstream autism research is not so scientific and not compatible with neurodiversity. Like the behaviorism that is so prevalent in the field, it measures the surface, badly.

Behind a lot of this research is an industry of behaviorists and capitalists who abuse the term “evidence-based” to the point of meaninglessness.

They think us pigeons.

So much of what is touted as “evidence-based” and “what works”:

• is ignorant of and fundamentally incompatible with neurodiversity and disability,
• utterly and obviously fails face validity,
• disregards harm,
• profits from our misery.

Get a Dose of Social Science

Avoid scientism and epistemic injustice, by getting a dose of social science.

Scientists are increasingly recognizing a moral imperative to collaborate with the communities 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

I’m spending a couple days with autism researchers & diagnostic physicians who are seeking to build a neurodiversity initiative at their university. I can’t tell you how refreshing it is to meet researchers/doctors who understand autistic people as we understand ourselves.

@JHMarble

Research should be conducted in a noble, honourable, and respectful way that explores a topic or subject area via thorough, structured and thoughtful means. Ideally, if the research concerns a particular community, then members of that community should be involved. The purpose of the research isn’t to only uncover lots of facts about the topic, although that is important, but it’s to show and share, in an accessible manner, how those facts translate to increase our understanding of an individual’s (human) life and, if necessary, what action(s) might be required because of the research.

Frontiers | Research by autistic researchers: an “insider’s view” into autism. The autistic way of being

Throughout history, scientific research has been defined in ways which further the agenda of ableist, white supremacist power systems. At the same time, traditional notions of what constitutes scientific research has been reified by policymakers and scholars in education, who equate “science” with clinical methods and hard-numbers data. Using the framework of DisCrit, we provided a brief critical analysis of the use of science by dominant groups to label minorities as “others” throughout U.S. history. This scientific research is strongly linked to education policy, which inexorably functions to separate white, non-dis/abled students from students who are constructed as deficient and/or dis/abled because of the articulation of their linguistic, cultural, and racial identities. The pervasive acceptance of the dis/abling scientific studies was (and is) largely due to what counts as scientific research, and what does not. The authors identified some of the current notions of what is considered “evidence” in research and education policy; despite progressive trends in modern medical research, traditional clinical and/or quantitative studies continue to serve as the “gold star” in education research and testing. Although scholars claim quantitative research is more objective and reliable, there are many opportunities for human error and subjectivity at the design and procedural level of research, which trouble these assertions of a fixed truth. In quantifying and parsing elements of the human experience, this type of research results in a loss of multidimensionality. In reality, this kind of research only serves to uphold the values of white supremacy and ableism.

Disrupting Dis/abilization: A Critical Exploration of Research Methods to Combat White Supremacy and Ableism in Education

In my title, I ask “academic, activist, or advocate?”—and my answer is that I am all three. You cannot belong to a community that suffers from violence, marginalization, and suicide and not be. In my introduction I tell readers all the different types of autistic people I have been in the eyes of the clinicians and professionals who deemed my future limited or limitless because whenever an autistic person tells you anything about what it means to be autistic that is not just a list of impairments or limitations, we are told that we must have the “easy” autism. I laid this out so transparently to challenge the idea that just because we (autistic people) have fought to be included in autism research does not mean that you can picture where we have been (including how we experienced our own autism growing up). To conclude: I will not leave my values at the door of the academy—I refuse. I refuse to abandon my community and to engage in the complicit silence. Instead, I offer up transparency, openness, a constantly reflection, and learning. Instead, I make space for growth, action, and strive toward a social change for autistic people. It seems there is nothing more radical than that.

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 reading 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

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 alone 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.

Change Your Language

While not all autism research is ableism, autism researchers can be ableist, including by talking about autistic people in sub-human terms (dehumanization), treating autistic people like objects (objectification), and making othering statements which set autistic people apart from non-autistic people, and below in status (stigmatization).

Using medicalized narratives of autism predicted higher odds of ableist cues compared to employing social model or neutral embodiment narratives. Greater inclusion of autistic people in research predicted significantly lower odds of ableist cues, while controlling for other contact with autistic people and career length. Next, we used reflexive thematic analysis to analyze researcher’s perceptions of autistic people and autism research. Narratives reflected core ideological disagreements of the field, such as whether researchers consider autism to be an intrinsic barrier to a good life, and whether researchers prioritize research which tackles “autism” versus barriers to societal inclusion for autistic people. Instrumentality (a form of objectification) was key to whether researchers considered a person to have social value with emphasis revolving around intellectual ability and independence. Lastly, language seemed to act as a tool of normalization of violence. Researchers relied on an amorphous idea of “autism” when talking about prevention or eradication, potentially because it sounds more palatable than talking about preventing “autistic people,” despite autism only existing within the context of autistic people.

We aimed to understand and evaluate autism researchers’ narratives and language use in describing autistic people and their views on autism research. In our sample, most participants held a medical model narrative, with fewer subscribing to a social model position, although around a third held a more neutral perspective which defined autistic as a way of being. We also identified that around 60% expressed cues of ableism which we conceptualized as dehumanization, objectification, and stigmatization. In terms of what predicted these ableist cues, social model and neutral-embodiment narratives and a higher degree of participatory research predicted significantly lower odds of expressing cues of ableism, above and beyond length of research career, and familial and non-familial contact with autistic people. We used reflexive thematic analysis to further examine the narratives and views being held, and identified six themes which captured an overall sense of disparity and disagreement amongst autism researchers. This analysis highlighted not only the potential need for conceptual reconsideration of “autism” but the fundamental need for change in the way in which autism researchers talk about autistic people and do autism research.

Frontiers | “Autism research is in crisis”: A mixed method study of researcher’s constructions of autistic people and autism research

“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 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.

At this point I’ve read about 80 studies related to this, and I’m so grossed out. Also furious. EVERYTHING gets done from the clinician/special ed educator perspective, with an occasional entry that includes the parental perspective for comparison. NONE of the studies include the perspective of autistic people.

Similarly, the author of “Interrogating Normal”:

In 2012, I entered the education program at Sonoma State University in order to search through the literature in education and the social sciences, and I hoped to bring together research on the enforcement of normality that would describe and illuminate the everyday dehumanization autistic people face. This dehumanization is not restricted to the exclusion and bullying that is a reliable feature of the social lives of autistic people; it is also a regular feature in clinical settings, in academic research, in seemingly authoritative books about autistic people, in media reports, in education, in social services, in fundraising narratives, and in social skills training for autistic youths and adults. This dehumanization is so widespread that it seems to be an intrinsic aspect of normality – an accepted and acceptable way to view the bodies, minds, and lives of autistic people, or of any people who consistently breach the unwritten rules of normality.

Interrogating Normal: Autism Social Skills Training at the Margins of a Social Fiction 

Lit reviews through the ignorant and ableist morass of autism studies are gut-punching for autistic researchers. We share the sentiments of autistic autism researcher Kieran Rose.

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 narrative 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.

Autistic Masking: Kieran Rose a new Academic Paper

The tyranny of the norm, thoroughly institutionalized and instrumented against us:

This ableism follows a long tradition of devaluation of disabled 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

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 framed 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

The entire autism community (which is to say not just #ActuallyAutistic people, but our family members, professionals working with us, and yes, non-autistic researchers) stands to gain from this broader understanding of what autism means. Our biggest problems are not biomedical.

@MxOolong

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.

There have been ‘rumblings’ in autism science, however, of the sort that Kuhn described. In a context of social change, with many challenges to established power structures, autistic advocates and autism scientists have increasingly called to replace the conventional medical paradigm and consider autism instead through the lens of neurodiversity, where autism is seen as one form of variation within a diversity of minds (Singer, 1998; Walker & Raymaker, 2020). These calls, stemming originally from autistic¹ activists (Pripas-Kapit, 2020; Sinclair, 1993) have increasingly found at least partial adherents from within autism science (Baron-Cohen, 2000; Gernsbacher, 2007; Happé & Frith, 2020; Mottron, 2011; Nicolaidis, 2012), suggesting that researchers could be on the brink of thinking about autism in a fundamentally different way. Doing so could radically change how we approach knowledge construction within autism science and the way that we support autistic people and their families in our practice.

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

We Reframe

We reframe out of the confines of the medical model and pathology paradigm and into the respectfully connected expanse of the biopsychosocial model and the Neurodiversity paradigm. We reframe from deficit ideology to structural ideology.

We, Stimpunks

What does that mean?

In other words…

One Idea Per Line

• We shift away from the medical model and pathology paradigm.
• We embrace the biopsychosocial model and Neurodiversity paradigm.
• We move away from focusing solely on deficits.
• We adopt a more holistic approach that considers social structures and systems.
• We prioritize respectful connections.

One Paragraph Summary

We are changing the way we think about medical conditions and disabilities. Instead of focusing on what is wrong with someone, we are looking at the whole person and how their biology, psychology, and social environment all play a role in their well-being. We are also recognizing and celebrating the unique strengths and perspectives of people with different ways of thinking and processing information. Instead of blaming individuals for their challenges, we are acknowledging that societal structures and systems can create barriers for them. By addressing these barriers, we hope to create a more fair and supportive society for everyone, regardless of their differences. This new way of thinking will help us understand, accept, and empower individuals with diverse neurological experiences.

Four Paragraph Summary

We reframe out of the confines of the medical model and pathology paradigm and into the respectfully connected expanse of the biopsychosocial model and the Neurodiversity paradigm. We reframe from deficit ideology to structural ideology. In this shift, we move away from viewing individuals solely through a medical lens, focusing on their perceived deficits and pathologies. Instead, we embrace a more inclusive and holistic approach, known as the biopsychosocial model. This model recognizes the interconnectedness of biological, psychological, and social factors in shaping an individual’s well-being.

Furthermore, we adopt the Neurodiversity paradigm, which celebrates and values the diverse ways in which individuals’ brains function. Rather than pathologizing differences, we acknowledge and respect the unique strengths and perspectives that neurodivergent individuals bring to society.

As we reframe our thinking, we also transition from a deficit ideology to a structural ideology. Rather than solely blaming individuals for their challenges, we recognize the impact of societal structures and systems that may hinder their full participation and inclusion. By addressing these structural barriers, we aim to create a more equitable and supportive environment for all individuals, regardless of their neurodivergence.

In embracing this new framework, we strive to foster understanding, acceptance, and empowerment for individuals across the neurodiversity spectrum. By shifting our perspective and adopting these inclusive paradigms, we can create a more compassionate and inclusive society for everyone.

AI Disclosure: The summaries above were created with the help of Elephas AI Assistant.

Accordions labelled “In other words…” explain things in different ways, including easy read, one idea per line, and plain language summaries.

What is “framing”?

Frames are mental structures that shape the way we see the world. As a result, they shape the goals we seek, the plans we make, the way we act, and what counts as a good or bad outcome of our actions. In politics our frames shape our social policies and the institutions we form to carry out policies. To change our frames is to change all of this. Reframing is social change.

The ALL NEW Don’t Think of an Elephant!: Know Your Values and Frame the Debate

You can’t see or hear frames. They are part of what we cognitive scientists call the “cognitive unconscious”—structures in our brains that we cannot consciously access, but know by their consequences. What we call “common sense” is made up of unconscious, automatic, effortless inferences that follow from our unconscious frames.

The ALL NEW Don’t Think of an Elephant!: Know Your Values and Frame the Debate

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 for new frames. Thinking differently requires speaking differently.

The ALL NEW Don’t Think of an Elephant!: Know Your Values and Frame the Debate

We also know frames through language. All words are defined relative to conceptual frames. When you hear a word, its frame is activated in your brain.

Yes, in your brain. As the title of this book shows, even when you negate a frame, you activate the frame. If I tell you, “Don’t think of an elephant!,” you’ll think of an elephant.

Though I found this out first in the study of cognitive linguistics, it has begun to be confirmed by neuroscience. When a macaque monkey grasps an object, a certain group of neurons in the monkey’s ventral premotor cortex (which choreographs actions, but does not directly move the body) are activated. When the monkey is trained not to grasp the object, most of those neurons are inhibited (they turn off), but a portion of the same neurons used in grasping still turn on. That is, to actively not grasp requires thinking of what grasping would be.

Not only does negating a frame activate that frame, but the more it is activated, the stronger it gets. The moral for political discourse is clear: When you argue against someone on the other side using their language and their frames, you are activating their frames, strengthening their frames in those who hear you, and undermining your own views. For progressives, this means avoiding the use of conservative language and the frames that the language activates. It means that you should say what you believe using your language, not theirs.

The ALL NEW Don’t Think of an Elephant!: Know Your Values and Frame the Debate

I used to tell my students that ideology never announces itself as ideology. It naturalizes itself like the air we breath. It doesn’t acknowledge that it is a way of looking at the word; it proceeds as if it is the only way of looking at the world. At its most effective, it renders itself unassailable: just the way things are. Not an opinion, not the result of centuries of implicit and explicit messaging, not a means of upholding a power structure. It just is.

the shame is ours

In order for this to happen, your entire frame of reference will have to change, and you will be forced to surrender many things that you now scarcely know you have.

The Fire Next Time by James Baldwin

You never had to look at me. I had to look at you. I know more about you than you know about me. Not everything that is faced can be changed; but nothing can be changed until it is faced.

James Baldwin, I Am Not Your Negro

Language is also a place of struggle.

Choosing the Margin as a Space of Radical Openness, bell hooks

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 risk. One needs a community of resistance.

Living as we did on the edge we developed a particular way of seeing reality. We looked both from the outside in and from the inside out. We focused our attention on the centre as well as on the margin. We understood both.

Choosing the Margin as a Space of Radical Openness, bell hooks

Reframe these states of being that have been labelled deficiencies or pathologies as human differences.

Normal Sucks: Author Jonathan Mooney on How Schools Fail Kids with Learning Differences

What is the “pathology paradigm”?

The pathology paradigm ultimately boils down to just two fundamental assumptions:

1. 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).
2. If your neurological configuration and functioning (and, as a result, your ways of thinking and behaving) diverge substantially from the dominant standard of  “normal,” then there is Something Wrong With You.

It is these two assumptions that define the pathology paradigm. Different groups and individuals build upon these assumptions in very different ways, with varying degrees of rationality, absurdity, fearfulness, or compassion – but as long as they share those two basic assumptions, they’re still operating within the pathology paradigm (just as ancient Mayan astronomers and 13th Century Islamic astronomers had vastly different conceptions of the cosmos, yet both operated within the geocentric paradigm).

THROW AWAY THE MASTER’S TOOLS: LIBERATING OURSELVES FROM THE PATHOLOGY PARADIGM • NEUROQUEER

What is the “neurodiversity paradigm”?

The neurodiversity paradigm is a specific perspective on neurodiversity – a perspective or approach that boils down to these fundamental principles:

1.) Neurodiversity is a natural and valuable form of human diversity.

2.) The idea that there is one “normal” or “healthy” type of brain or mind, or one “right” style of neurocognitive functioning, is a culturally constructed fiction, no more valid (and no more conducive to a healthy society or to the overall well-being of humanity) than the idea that there is one “normal” or “right” ethnicity, gender, or culture.

3.) The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics that manifest in regard to other forms of human diversity (e.g., diversity of ethnicity, gender, or culture). These dynamics include the dynamics of social power inequalities, and also the dynamics by which diversity, when embraced, acts as a source of creative potential.

What It Doesn’t Mean:

The neurodiversity paradigm provides a philosophical foundation for the activism of the Neurodiversity Movement, but the two aren’t the same. For instance, there are people working on developing inclusive education strategies based on the neurodiversity paradigm, who don’t identify as social justice activists or as part of the Neurodiversity Movement.

Example of Correct Usage:

“Those who have embraced the neurodiversity paradigm, and who truly understand it, do not use pathologizing terms like ‘disorder’ to describe neurocognitive variants like autism.”

NEURODIVERSITY: SOME BASIC TERMS & DEFINITIONS • NEUROQUEER

What is “respectful connection”?

The notion of Neurodiversity can allow you to embrace your child for who they are, and it can empower you to look for respectful solutions to everyday problems. It can also help you to raise your child to feel empowered and content in their own skin.

Respectfully Connected | Neurodiversity Paradigm Parenting FAQs

Instead of intensive speech therapy – we use a wonderful mash-up of communication including AAC, pictures scribbled on notepads, songs, scripts, and lots of patience and time.

Instead of sticker charts and time outs, or behavior therapy – we give hugs, we listen, solve problems together, and understand and respect that neurodivergent children need time to develop some skills

Instead of physical therapy – we climb rocks and trees, take risks with our bodies, are carried all day if we are tired, don’t wear shoes, paint and draw, play with lego and stickers, and eat with our fingers.

Instead of being told to shush, or be still- we stim, and mummies are joyful when they watch us move in beautiful ways.

Respectfully Connected | #HowWeDo Respectful Parenting and Support

• Be patient. Autistic children are just as sensitive to frustration and disappointment in those around them as non-autistic children, and just like other children, if that frustration and disappointment is coming from caregivers, it’s soul-crushing.
• Presume competence. Begin any new learning adventure from a point of aspiration rather than deficit. Children know when you don’t believe in them and it affects their progress. Instead, assume they’re capable; they’ll usually surprise you. If you’re concerned, start small and build toward a goal.
• Meet them at their level. Try to adapt to the issues they’re struggling with, as well as their strengths and special interests. When possible, avoid a one-size-fits all approach to curriculum and activities.
• Treat challenges as opportunities. Each issue – whether it’s related to impulse control, a learning challenge, or a problem behavior – represents an opportunity for growth and accomplishment. Moreover, when you overcome one issue, you’re building infrastructure to overcome others.
• Communicate, communicate, communicate. For many parents, school can be a black box. Send home quick notes about the day’s events. Ask to hear what’s happening at home. Establish communication with people outside the classroom, including at-home therapists, grandparents, babysitters, etc. Encourage parents to come in to observe the classroom. In short, create a continuous feedback loop so all members of the caregiver team are sharing ideas and insights, and reinforcing tactics and strategies.
• Seek inclusion. This one’s a two-way street: not only do autistic children benefit from exposure to their non-autistic peers, those peers will get an invaluable life lesson in acceptance and neurodiversity. The point is to expose our kids to the world, and to expose the world to our kids.
• Embrace the obsession. Look for ways to turn an otherwise obsessive interest into a bridge mechanism, a way to connect with your students. Rather than constantly trying to redirect, find ways to incorporate and generalize interests into classroom activities and lessons.
• Create a calm oasis. Anxiety, sensory overload and focus issues affect many kids (and adults!), but are particularly pronounced in autistic children. By looking for ways to reduce noise, visual clutter and other distracting stimuli, your kids will be less anxious and better able to focus.
• Let them stim! Some parents want help extinguishing their child’s self-stimulatory behaviors, whether it’s hand-flapping, toe-walking, or any number of other “stimmy” things autistic kids do. Most of this concern comes from a fear of social stigma. Self-stimulatory behaviors, however, are soothing, relaxing, and even joy-inducing. They help kids cope during times of stress or uncertainty. You can help your kids by encouraging parents to understand what these behaviors are and how they help.
• Encourage play and creativity. Autistic children benefit from imaginative play and creative exercises just like their non-autistic peers, misconceptions aside. I shudder when I think about the schools who focus only on deficits and trying to “fix” our kids without letting them have the fun they so richly deserve. Imaginative play is a social skill, and the kids love it.

A parent’s advice to a teacher of autistic kids

I just want to do what is best for my child. Can this notion of Neurodiversity help me do that?

Yes, absolutely! The notion of Neurodiversity can allow you to embrace your child for who they are, and it can empower you to look for respectful solutions to everyday problems. It can also help you to raise your child to feel empowered and content in their own skin.

Do you think I am ableist? I thought I was helping my child…

Yes, I think you’re ableist. I think most of us are ableist (even if we are ourselves disabled), and because the social climate is ableist, it takes a lot to question ourselves. They way to be respectful is not about being perfect, but we can question our own ableism so as not to let it interfere with our children and their rights.

That is hard for me to hear. I didn’t think I was ableist and it hurts to be told I am.

That’s fair enough. However, if you want to do what is best for your child you will need to move past that in order to begin to shed this ableism from your everyday reactions and choices.

How does it feel to be autistic?

That is really complex and difficult to answer. I cannot explain that in as much depth as would give you a good knowledge of it, however there are so many autistic writers you can look to for guidance on that. If you are asking me to to describe how I experience life, as compared to how you experience life, this is a huge question.

Is there a quick way to understand all this?

No, not really. The hardest part is challenging yourself and dominant social assumptions. It is a long road but the great thing is that you’re already on it. You’ve started; because you’re questioning yourself.

Respectfully Connected | Neurodiversity Paradigm Parenting FAQs

1. Learn from autistic people

2. Tell your child they are autistic

3. Say NO to all things stressful & harmful

4. Slow down your life

5. Support & accommodate sensory needs

6. Value your child’s interests

7. Respect stimming

8. Honour & support all communication

9. Minimise therapy, increase accommodations & supports

10. Explore your own neurocognitive differences

Respectfully Connected | 10 ‘Autism Interventions’ for Families Embracing the Neurodiversity Paradigm

It’s people’s own attitudes that often lie behind alleged ‘autistic behaviour’.

Ann Memmott

Meeting our children where they are doesn’t mean giving up on them. It means seeing them as a whole person, broadening their access to communication, helping them figuring out their unique learning styles, helping them figuring out their sensory profile, and putting accommodations in place. When we work with our children instead of against them, instead of trying to fix them, we end up with happier children. And that is a goal worth striving for.

Meghan Ashburn, I Will Die On This Hill

Applying ABA in therapeutic practice is entirely unacceptable to us. Therapist Neurodiversity Collective does things differently:

• Zero ABA, including positive reinforcement
• Zero desensitization, tolerance, or extinction targets or approaches
• Zero neuronormative goals (masking of sensory systems, monotropic interests systems, anxiety)
• Zero training neurotypical social skills

We are trauma-informed and respectful of sensory systems, diversity in social intelligence, autistic learning styles, including monotropic interest systems.

We take the research framework from developmental and relationship-based therapy models, use our knowledge of client and caregiver perspectives (no goals for masking, eye contact, whole body listening, appearing neurotypical, etc.), and apply our clinical background to implement therapy practices which are respectful, culturally competent, trauma-sensitive and empathetic.

Non-ABA Evidence Based Practice | Therapist Neurodiversity Collective

We presume competence.

We believe that AAC has no prerequisites.

We respect sensory differences.

We respect body autonomy.

Most importantly, we continually learn from our neurodivergent mentors as to what therapy approaches and methodologies are respectful and uphold human rights and self-determination.

Non-ABA Evidence Based Practice | Therapist Neurodiversity Collective

The target of intervention is not autistic children, but their social and physical environments. Autistic children [need to be] supported in families and communities to develop as unique and valued human beings, without conforming to the developmental trajectory of their neurotypical peers.

Briannon Lee

What is the “biopsychosocial model”?

The proposed biopsychosocial model allows us to provide therapeutic intervention (medical model) and recommend structural accommodation (legislative obligation) without pathologization (social model). In other words, we can deal pragmatically with the individuals who approach us and strive for the best outcomes, given their profile and environment.

Neurodiversity at work: a biopsychosocial model and the impact on working adults | British Medical Bulletin | Oxford Academic

Within the biopsychosocial model of neurodiversity, understanding work-related intervention and treatment becomes more about adjusting the fit between the person and their environment than about treating a disorder. Critical review of the extant biopsychosocial research supports the social model proposition that the individual is not disabled, but the environment is disabling.

Exclusion rates point to an economic, social and moral imperative to improve outcome-based research, from which we can advise practition-ers and individuals on which adjustments improve inclusion, within a biopsychosocial model.

A reductive, medical paradigm of research is incongruent with the legal status of neurominorities as protected conditions in most developed countries, to which organizations must adjust.

The aim of occupational accommodations for neurominorities is to access the strengths of the spiky profile and palliate the struggles.

Neurodiversity at work: a biopsychosocial model and the impact on working adults | British Medical Bulletin | Oxford Academic

The Biopsychosocial model was first conceptualised by George Engel in 1977, suggesting that to understand a person’s medical condition it is not simply the biological factors to consider, but also the psychological and social factors 1.

Bio (physiological pathology)

Psycho (thoughts emotions and behaviours such as psychological distress, fear/avoidance beliefs, current coping methods and attribution)

Social (socio-economical, socio-environmental, and cultural factors suchs as work issues, family circumstances and benefits/economics)

Biopsychosocial Model – Physiopedia

Autistic People Recognize Challenges Associated with Autism

Despite viewing autism as central to identity, autistic participants in the study by Kapp et al. (2013) did not differ from non-autistic participants in negative emotions toward autism or in the perceived importance of supports to help autistic people gain adaptive skills. This overlap between the neurodiversity movement and the medical model indicates a more nuanced perspective on disability than the standard social model wherein impairments are believed to arise solely from societal factors. The perspective of autism endorsed by many members of the neurodiversity movement is more consistent with a biopsychosocial model (Engel, 1977) of autism, wherein internal differences interact with social factors to create challenges associated with autism (Kapp, 2013). For example, an autistic researcher pointed out that reduced theory of mind, which has been postulated to be a core deficit within autistic people (Baron-Cohen et al., 1995), is not an impairment that resides within autistic people but rather a mutual difficulty relating, as neurotypical people also face often unacknowledged challenges understanding the minds of autistic people (Milton, 2012). Further evidence that autistic adults’ perceptions of autism align with a biopsychosocial model arises from research demonstrating that some autistic adults recognize that autistic traits interfere with employment and socialization, and attempt to pass as “normal” (Griffith et al., 2012).

These findings provide support for the importance of listening to autistic people and becoming more familiar with their experiences in order to address and counter stigma. Indeed, people aware of the neurodiversity movement are more likely to view autism as a positive identity that does not need a cure (Kapp et al., 2013). Although superficially surprising, our finding that numerically more autistic participants supported (55%), rather than opposed (26%), the medical model in their definitions of autism is consistent with prior research demonstrating overlap between the medical model and the neurodiversity movement in terms of shared recognition of challenges associated with autism (Kapp et al., 2013), which is consistent with a biopsychosocial model of autism (Kapp, 2013).

Frontiers | Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts

What is “deficit ideology”?

Briefly, deficit ideology is a worldview that explains and justifies outcome inequalities— standardized test scores or levels of educational attainment, for example—by pointing to supposed deficiencies within disenfranchised individuals and communities (Brandon, 2003; Valencia, 1997a; Weiner, 2003; Yosso, 2005). Simultaneously, and of equal importance, deficit ideology discounts sociopolitical context, such as the systemic conditions (racism, economic injustice, and so on) that grant some people greater social, political, and economic access, such as that to high-quality schooling, than others (Brandon, 2003; Dudley-Marling, 2007; Gorski, 2008a; Hamovitch, 1996). The function of deficit ideology, as I will describe in greater detail later, is to justify existing social conditions by identifying the problem of inequality as located within, rather than as pressing upon, disenfranchised communities so that efforts to redress inequalities focus on “fixing” disenfranchised people rather than the conditions which disenfranchise them (Weiner, 2003; Yosso, 2005).

Unlearning Deficit Ideology and the Scornful Gaze: Thoughts on Authenticating the Class Discourse in Education

At the core of deficit ideology is the belief that inequalities result, not from unjust social conditions such as systemic racism or economic injustice, but from intellectual, moral, cultural, and behavioral deficiencies assumed to be inherent in disenfranchised individuals and communities (Brandon, 2003; Gorski, 2008a, 2008b; Valencia, 1997a; Yosso, 2005).

Unlearning Deficit Ideology and the Scornful Gaze: Thoughts on Authenticating the Class Discourse in Education

And this is the surest sign of deficit ideology: the suggestion that we fix inequalities by fixing disenfranchised communities rather than that which disenfranchises them. This, then, is the function of deficit ideology: to manipulate popular consciousness in order to deflect attention from the systemic conditions and sociopolitical context that underlie or exacerbate inequities, such as systemic racism or economic injustice, and to focus it, instead, on recycling its own misperceptions, all of which justify inequalities (García & Guerra, 2004; Jennings, 2004). It deflects our scornful gaze from the mechanisms of injustice and the benefactors of these mechanisms, and trains it, instead, on those citizens with the least amount of power to popularize a counter-narrative, just as the dominant “achievement gap” discourse draws attention away from underlying systemic conditions, such as growing corporate control of public schools, and pushes it toward “at-risk” youth from “broken” homes whose “culture of poverty” impedes them from “making it.” Deficit ideology defines every social problem in relation to those toward the bottom of the power hierarchy, trains our gaze in that direction and, as a result, manipulates the popular discourse in ways that protect and reify existing sociopolitical conditions (Brandon, 2003; Yosso, 2005).

Unlearning Deficit Ideology and the Scornful Gaze: Thoughts on Authenticating the Class Discourse in Education

Equity is not compatible with deficit ideology because the function of deficit ideology is to obscure the actual causes of disparities.

Paul Gorski

No set of curricular or pedagogical strategies can turn a classroom led by a teacher with a deficit view of families experiencing poverty into an equitable learning space for those families (Gorski 2013; Robinson 2007).

Poverty and the ideological imperative: a call to unhook from deficit and grit ideology and to strive for structural ideology in teacher education

What is “structural ideology”?

Educators with a structural ideology understand that educational outcome disparities are dominantly the result of structural barriers, the logical if not purposeful outcome of inequitable distributions of opportunity and access in and out of school (Gorski 2016b).

Poverty and the ideological imperative: a call to unhook from deficit and grit ideology and to strive for structural ideology in teacher education: Journal of Education for Teaching: Vol 42, No 4

This is equity literacy: having the knowledge that a commitment to equity requires us to ask these questions and then having the will to ask them. There is no path to equity literacy that does not include the adoption of a structural ideology because there is no way to cultivate equity through an ideological standpoint, like deficit or grit ideology, that is formulated to discourage direct responses to inequity.

Poverty and the ideological imperative: a call to unhook from deficit and grit ideology and to strive for structural ideology in teacher education: Journal of Education for Teaching: Vol 42, No 4

‘Everybody works hard?’ one student asked timidly. ‘There must be more to the story than hard work?’ another proposed.
With this we began our exploration on socioeconomically based educational outcome disparities and how to eliminate them.

Poverty and the ideological imperative: a call to unhook from deficit and grit ideology and to strive for structural ideology in teacher education: Journal of Education for Teaching: Vol 42, No 4

In this article I explore the educational equity implications of three popular ideological positions that drive teachers’ and teacher educators’understandings of, and responses to, poverty and economic injustice in schools: deficit ideology, grit ideology, and structural ideology. The educator’s ideological position, I illustrate, determines their understandings of conditions such as socio-economic-based outcome disparities. Those understandings, in turn, determine the extent to which the strategies they can imagine have the potential to eliminate or mitigate those disparities. I then argue that teacher education for equity and economic justice must equip pre- and in-service educators with a structural ideology of poverty and economic injustice, based on a sophisticated understanding of relationships between structural inequalities and educational outcome disparities, rather than a deficit or grit ideology, both of which obscure structural inequalities and, as a result, render educators ill-equipped to enact equitable and just teaching, leadership and advocacy.

‘Everybody works hard?’one student asked timidly.‘There must be more to the story than hard work?’ another proposed.

With this we began our exploration on socioeconomically based educational outcome disparities and how to eliminate them.

In this essay, I draw on the principles of equity literacy (Gorski 2016a; Gorski and Swalwell 2015; Swalwell 2011) in order to demonstrate what my students and I began to uncover in class that day. The students were not lacking desire to develop the knowledge and skills necessary to create equitable learning environments for their future students. nor, thanks to their more methods-oriented coursework, were they short on practical strategies or ideas for solving the ‘achievement gap’. The trouble, instead, was that a majority of the students had been socialised to fundamentally misunderstand poverty and its impact on educational outcome disparities. as a result, despite good intentions, the strategies they were capable of imagining – trendy instructional interventions, the cultivation of grit in students experiencing poverty, programmes designed to encourage higher levels of parent involvement by economically marginalised families – sidestepped completely the causes of the disparities they felt desperate to redress. The trouble was not dispositional or practical. Instead it was ideological, borne of faulty belief systems that, if not reshaped, would undermine their potentials to be the equitable teachers they hoped to be.

With this in mind, my purpose is to argue that when it comes to issues surrounding poverty and economic justice the preparation of teachers must be first and foremost an ideological endeavour, focused on adjusting fundamental understandings not only about educational outcome disparities but also about poverty itself. I will argue that it is only through the cultivation of what I call a structural ideology of poverty and economic justice that teachers become equity literate (Gorski 2013), capable of imagining the sorts of solutions that pose a genuine threat to the existence of class inequity in their classrooms and schools. After a brief clarification of my case for the importance of ideology, I begin by describing deficit ideology, the dominant ideological position about poverty that is informed in the US and elsewhere by the myth of meritocracy (Mcnamee and Miller 2009), and its increasingly popular ideological offshoot, grit ideology (Gorski 2016b). after explicating these ideological positions and how they mis- direct interpretations of poverty and its implications, I describe structural ideology, an ideological position through which educators understand educational outcome disparities in the context of structural injustice and the unequal distribution of access and opportunity that underlies poverty (Gorski 2016a). I end by sharing three self-reflective questions designed to help me assess the extent to which my teacher education practice reflect the structural view.

On the other end of the continuum are people who tend to understand poverty and issues such as the family involvement disparity as logical, if unjust, outcomes of economic injustice, exploitation, and inequity. adherents to a structural ideology (Gorski 2016b), they are likely to define gaps in in-school family involvement as interrelated with the inequities with which people experiencing poverty contend. So, recognising people experiencing poverty as targets, rather than causes, of these unjust conditions, they might understand lower rates of in-school involvement as a symptom of in-school and out-of-school conditions that limit their abilities to participate at the same rates as their wealthier peers. These conditions, such as families’ lack of access to transportation or schools’ practices of scheduling opportunities for in-school involvement in ways that make them less accessible to people who work evenings (as economically marginalised people are more likely than their wealthier peers to do) are rendered invisible by the deficit view.

Poverty and the ideological imperative: a call to unhook from deficit and grit ideology and to strive for structural ideology in teacher education: Journal of Education for Teaching: Vol 42, No 4

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 play 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

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 instruments 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 incremental 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 neurotypical 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?

For too long, autism research has been limited by the rigid adherence to criterion-related validity—concurrent validity (does the measure produce similar results to other existing measures?) and predictive validity (does the measure predict performance on an outcome variable?)—and particularly the former. We need to shift the balance to (at least) an equal focus on content validity: Does the test measure what it aims at testing (face validity), and does it relate to underlying theoretical concepts (construct validity)? In simple terms, does the measure resonate with actual autistic experiences?

This will take bravery on the part of researchers, to start from scratch and develop measures that accurately assess the topic of interest, developing appropriate tools in col- laboration with autistic people. It will take bravery from authors to submit their research papers with their data based on new and novel instruments. However, mostly it will take bravery from journal reviewers and editors to accept that for the field to move forward we need to encourage a greater focus on content-related validity rather than criterion- related validity. Instead of focusing on whether we are measuring autistic experiences in the same way as our predecessors, let us be sure we understand what it is we are trying to measure.

Measuring the Wrong Thing the Right Way? Time to Rethink Autism Research Tools | Autism in Adulthood

Most of the supposed evidence for these theories lacks what’s called ‘face validity’, in the eyes of many of the people being studied – that is, it doesn’t look like it’s measuring what it’s supposed to be measuring at all. Too much autism research has been done without autistic input, which could have prevented data being misinterpreted, flagged up when studies’ goals bore no relation to autistic wellbeing, and prevented major errors of omission.

The failures of autism science are not random: they reflect systematic power imbalances.

Autism and Scientism

The history of autism research and practice has been beset by controversy and expensive ‘dead-ends’….a lack of participation, poor ethics or a lack of informed consent, as well as how research priorities are often a poor match with community priorities… Essentially, what is often being critiqued is the very lack of power that participants have within the research process. With greater power-sharing from the outset, wrong turns and mishaps could be diverted away before vast sums of money are fritted away through researchers not checking the ‘face validity’ of their research aims and objectives.

Theorising autism – Damian EM Milton, Jonathan Green, 2024

The Medical Model Is Essentially Individualist

Yet on a programmatic basis, disability policy and other social programs remain enmeshed, even at their best, in accommodation models, where specific proven needs or deficits generate specific individualized responses. What might it look like to shift our framing of the social safety net to a universal model? 

I Shouldn’t Have to Dehumanize My Son to Get Him Support | The Nation

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, accommodations models require individual episodes of forced intimacy, repeated over and over and over for the rest of your life. We should treat each episode of forced intimacy as a stress case that puts our designs to the test of real life.

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

From within an emerging paradigm, clinicians and researchers must appreciate the shift in discourse regarding neurodiversity from an active, vocal stake- holder group and embrace new avenues for study and practice that address practical concerns regarding education, training, work and inclusion. This article has provided an overview of the neurodiversity employment picture; namely high percentages of exclusion juxtaposed against a narrative of talent and hope. Understanding the importance of nomenclature, sensory sensitivity and the lasting psychological effects of intersectional social exclusion is key for physicians wanting to interact confidently and positively with neurominorities. The proposed biopsychosocial model allows us to provide therapeutic intervention (medical model) and recommend structural accommodation (legislative obligation) without pathologization (social model). In other words, we can deal pragmatically with the individuals who approach us and strive for the best outcomes, given their profile and environment.

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

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.

The notion that each of us isn’t entirely the master of his own fate can be awfully hard to accept. It’s quite common to attribute to an individual’s personality or character what is actually a function of the social environment—so common, in fact, that psychologists have dubbed this the Fundamental Attribution Error. It’s a bias that may be particularly prevalent in our society, where individualism is both a descriptive reality and a cherished ideal. We Americans stubbornly resist the possibility that what we do is profoundly shaped by policies, norms, systems, and other structural realities. We prefer to believe that people who commit crimes are morally deficient, that the have-nots in our midst are lazy (or at least insufficiently resourceful), that overweight people simply lack the willpower to stop eating, and so on.81 If only all those folks would just exercise a little personal responsibility, a bit more self-control!

The Fundamental Attribution Error is painfully pervasive when the conversation turns to academic failure. Driving Duckworth and Seligman’s study of student performance was their belief that underachievement isn’t explained by structural factors—social, economic, or even educational. Rather, they insisted, it should be attributed to the students themselves, and specifically to their “failure to exercise self-discipline.” The entire conceptual edifice of grit is constructed on that individualistic premise, one that remains popular for ideological reasons even though it’s been repeatedly debunked by research.

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 social model of disability. 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.

Fundamental Attribution Error and Harm Reduction Theater

Conquering Gaze from Nowhere: Meritocracy Myths, Marked Bodies, and Spoiled Identities

FAE and the conquering gaze exhaust marginalized students, patients, and employees. Check your FAE. Check your gaze.

Social psychologists sometimes use the term “fundamental attribution error” to describe a tendency to pay so much attention to character, personality, and individual responsibility that we overlook how profoundly the social environment affects what we do and who we are.  This error has political implications:  The more we focus on people’s persistence (or self-discipline more generally), the less likely we’ll be to question larger policies and institutions. Consider Paul Tough’s declaration that “there is no antipoverty tool we can provide for disadvantaged young people that will be more valuable than the character strengths…[such as] conscientiousness, grit, resilience, perseverance, and optimism.”  Whose interests are served by the astonishing position that  “no antipoverty tool” — presumably including Medicaid and public housing — is more valuable than an effort to train poor kids to persist at whatever they’ve been told to do?

Grit: A Skeptical Look at the Latest Educational Fad (##) – Alfie Kohn

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 “frame” 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 neurocentrism, judging another neurology by the capabilities and standards of one’s own neurology. Mottron and his research associate Michelle Dawson use the term “normocentrism”: 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.

• Is Your Training from the 1940s?
• Are You Really Evidence-Based?
• Are You Disregarding Harm and Profiting From Our Misery?
• Do You Dishonour Autistic People?
• Are You Qualified?: Don’t Confuse Your Lecture with Our Life Experience
• Are You Feeding White Supremacist Ideology?
• What Instead? Participatory, Emancipatory, Activist Research