🗂 Facts, Fire, and Feels: Research-Storytelling from the Edges

“Sphere of Humanity: A Traverse Gift of Energetic Connectedness” by Heike Blakley

Our research initiative focuses 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.

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

To autism 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 power to see and not be seen, to represent while escaping representation.

Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective

The interpretation of objectivity as neutral does not allow for participation or stances. This uninvolved, uninvested approach implies “a conquering gaze from nowhere” (Haraway 1988). In many ways, claims of objectivity allow one to “represent while escaping representation” (Haraway 1988) and mimics the construction of Whiteness2 in the racialization of marginalized peoples (Battey and Leyva 2016Guess 2006). Indeed, there is extensive evidence suggesting that STEM cultural norms are traditionally White, masculine, heteronormative and able-bodied (Atchison and Libarkin 2016Chambers 2017Eisenhart and Finkel 1998Johnson 2001Nespor 1994Seymour and Hewitt 1997Traweek 1988). Thus, while purporting to be a neutral application of a generic protocol, science-and STEM more broadly-has a distinct set of cultures that governs legitimate membership and acceptable behaviors. The concept of a meritocracy is often used to justify who succeeds in STEM cultures. However, far from “leveling the playing field”, meritocracies exist in cultural systems that prioritize people who have, or to a lesser extent closely emulate, these traits. Success in science, then, tends to privilege cultural traits associated with the above identities and often marginalizes scientists who can not or will not perform these identities. This introduces structural inequities in the pursuit of science that align with social manifestations of racism, colonialism, sexism, homophobia and ableism (Cech and Pham 2017Wilder 2014).

Defining the Flow—Using an Intersectional Scientific Methodology to Construct a VanguardSTEM Hyperspace

Get 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

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

Autism and Scientism

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
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

This scene is quite similar to how I experience an autism sensory overload. When sounds, lights, clothing or social interaction can become painful to me. When it goes on long enough it can create what is called a meltdown or activation of the “fight-flight-freeze-tend-befriend” (formerly known as “fight or flight”) response and activation of the HPA axis; a “there is a threat in the environmentadrenaline-cortisol surge.

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 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.

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

Hate speech towards autistic people ought to be prevented

jon adams on Twitter

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

I would like to honour all the autistic people who survive the care system somehow.

All those who survive extreme ‘therapy’.

All those who are brought to their knees, reading hellish descriptions of their loved people.

And all who did not survive this onslaught.

ANN MEMMOTT PGC🌈 ON TWITTER

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.

Source: 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

One of the most punk angst people in history is Nina Simone.

AFROPUNK: The Movie

She was neurodivergent and did her best work as an activist completely unaware she was bipolar and suffering from PTSD. 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

Are You Qualified?: Don’t Confuse Your Lecture with Our Life Experience

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

The people society says are the most qualified to help are the people least equipped to understand.

How Autistic Mentors Can Help “Problematic” Autistic Students Succeed In School — THINKING PERSON’S GUIDE TO AUTISM

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.

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
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

The Medical Model Is Essentially Individualist

The medical model is essentially individualist.

The prevalence of deficit-based thinking has the further consequence of focusing attention directly on the individual and away from social and environmental factors that might in fact play a significant role in shaping autistic lives (Engel, 1977).

Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science

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

Disability systems rely on artificial economies of scarcity. Programs are underfunded, so caregivers, teachers, social workers, and disabled people themselves are all pushed to project their needs as necessary and virtuous. 

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

Autism researchers have given autistic people zero reasons to trust them, after over a decade of cure and epidemic and plague language. For some reason being an autism researcher means never having to say you’re sorry.

Sara Luterman
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

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

Shave the Pride by Le Butcherettes

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 literacystructural ideology vs. deficit ideologydesigning 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.

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

Is Your Training from the 1940s?

Are you confused, because you attended a lecture reading out the myths from the original 1940s version?  Welcome to this very important update.

The old 1940s version of autism has turned out to be based on very poor evidence, and deserves a decent burial.

What’s it like, trying to grow up in a world that wants to see you as a fault, because that’s what two men said, 80 years ago, after looking at a handful of mostly male, white children with profound support needs?

Autism: Some Vital Research Links

So, how on earth have we ended up with this many myths continuing painfully from one decade to the next?

I’m afraid the answer is that too much of the training has been stuck in the 1940s. Too much is done by non-autistic people, often ones who happen to know an autistic person in some way (maybe a relative) but seemingly have never asked them about life. I mean ‘asked’ in any communication sense, not just speech. Over a million autistic people in the UK, and too often, such trainers have none of them as personal friends, none of them as colleagues. Isn’t that odd?

Such trainers pass on the ancient myths, generation after generation. They write them down, put them on Powerpoint presentations, and deliver them to you as if they are fact. Research based in part on materials from the 1990s and 1980s, which was based largely on watching groups of profoundly disabled young men in a care home, as far back as the 1940s. As far removed from a balanced view of autism as one can get, in fact.

Worse still, they often expect you to pay for this. It might look slick, with excellent graphics, and the trainer might look like they could pose for a fashion magazine . But…are you really wanting 1940s material?

Ann’s Autism Blog: Autism. Is your training from the 1940s?

Are You Really Evidence-Based?

And if it turns out that, contrary to widespread assumptions, behavior modification techniques aren’t supported by solid data even when used with autistic kids, why would we persist in manipulating anyone with positive reinforcement? A rigorous new meta-analysis utterly debunks the claim that applied behavior analysis (ABA) therapy is the only intervention for children with autism that’s “evidence-based.” In fact, it raises serious questions about whether ABA merits that description at all.

You might assume that those who use the phrase “evidence-based practice” (EBP) are offering a testable claim, asserting that the practices in question are supported by good data. In reality, the phrase is more of an all-purpose honorific, wielded to silence dissent, intimidate critics, and imply that anyone who criticizes what they’re doing is rejecting science itself. It’s reminiscent of the way a religious leader might declare that what we’ve been told to do is “God’s will”: End of discussion.

Moreover – and it took me awhile to catch on to this – behaviorists often use “EBP” just as a shorthand for the practices they like, in contrast to the (progressive or humanistic) approaches they revile. It doesn’t matter if the evidence is actually weak or ambiguous or even if it points in the other direction. They’ll always come up with some reason to dismiss those inconvenient findings because their method is “evidence-based” by definition. (On social media and elsewhere, you can get a glimpse of how modern behaviorism resembles a religious cult – closer to Scientology than to science – with adherents circling the wagons, trading ad hominem attacks on their critics, and testing out defensive strategies to employ when, for example, people with autism speak out about how ABA has harmed them. Or when scholarship shows just how weak the empirical case for ABA really is.)

Which brings us back to that new research review. The work of eleven authors – including, interestingly, an ABA therapist – representing the University of Texas, Boston College, Vanderbilt, and Mount Holyoke, it was published in January 2020 in Psychological Bulletin (PB), a prestigious social science journal that specializes in lengthy integrative research reviews. The article is not a polemic. It does not consider, and appears not even to be informed by, any of the broader objections to ABA that are raised by autistic people or that I’ve raised here. It confines itself to describing peer-reviewed research. The authors cast a wide net, looking for every English-language study in the last half-century that compared an intervention group with a control group in treating children up to age 8 who had been diagnosed with Autism Spectrum Disorder. This yielded 1,615 separate results from 150 reports representing 6,240 participants.

The most striking finding in this research review is how few high-quality assessments of “the primary approach used in clinical practice” – that is, ABA – have ever been conducted. In fact, the great majority of ABA studies were so poorly designed that they didn’t merit inclusion in this review. Rather than comparing the results of different treatments for groups of children, behaviorist journals commonly publish single-subject studies, in which one child is assessed before and after treatment. (This method was invented by behaviorists back when their behavior-shaping efforts were limited to lab rats.) You don’t have to be a trained data analyst to see the serious limitations of this method in terms of the results’ lack of generalizability. For the authors of the PB review, these limitations were so glaring that it didn’t even make sense for them to bother with the results of single-subject studies. Yet those dubious results are the primary basis for behaviorists’ claims that ABA is “evidence-based.”

Autism and Behaviorism – Alfie Kohn

I think we’re just going to have to let the term “evidence-based” go. There seems to be an inverse relationship between the extent to which a practice is described as evidence-based, and the quality of evidence supporting its use.

Dr. Kristen Bottema-Beutel on Twitter

Are You Disregarding Harm and Profiting From Our Misery?

Attention to adverse outcomes was absent in almost all studies and inadequate in the remaining few: 139 (93%) did not even mention or allude to this possibility, 11 (7%) had cursory statements, and none indicated that adverse events were monitored, much less how. Scrutiny of the poorly reported reasons for participant withdrawal and of effect sizes for reported outcomes yielded evidence that harms had occurred, yet were never interpreted as such.

Bottema-Beutel et al. follow Rodgers et al. (2020), whose systematic review of early intensive applied behavior analysis (ABA)-based autism interventions also found a pervasive failure to consider harms. Nowhere in this highly influential literature was there any reported effort to monitor or collect data on adverse outcomes. Study protocols, where plans to assess adverse events should prospectively be specified, were unavailable. Reported long-term outcomes, crucial for understanding harms, were lacking for early autism interventions claimed to have lifelong effects. What harms there may have been across any timescale thus could not be determined. Instead, Rodgers et al. found poor quality studies at high risk of bias, leaving ignored ergo unknown harms balanced against uncertain and inconclusive evidence for benefits. Such “preventable uninformativeness” due to poor standards in intervention research has been flagged as a violation of research ethics, entailing de facto harms for study participants and the studied population (Zarin et al., 2019). In this way, the widespread promotion of early intensive autism interventions, based on the biased deployment of a literature uninformative about their benefits versus harms, has been and continues to be inherently harmful to autistics.

Failures in addressing harms have proliferated across autism research, Bottema-Beutel et al. suggest, for reasons such as the embrace of low standard by journals, and the omnipresence of unchecked conflicts of interest (Bottema-Beutel et al., 2020b). Disregard of harms has in turn wrongly been interpreted as evidence of no harms, with consequences rippling out to other areas (e.g. early detection and screening), distorting research and practice. Despite a large literature spanning decades, accumulated knowledge about potential or actual harms to autistics from interventions that may occupy many of their waking hours, for years, is negligible. The foundations for adequate systems or methods for monitoring harms beyond the scope of intervention studies are thus lacking. Indeed, conflicts of interest entangled with low standards in research and practice would undermine future efforts to accurately capture harms via routinely collected data. Nothing justifies these multiple failures on the part of autism researchers.

We welcome the attention to harms shown by Bottema-Beutel et al. and Rodgers et al., as well as by Benevides et al. (2020), who include, among their top 5 autism research priorities, a question about the harms of behavioral and other interventions. But this attention is as rare as it is terribly overdue. We are left with an influential literature lacking fair tests of the benefits versus harms of autism interventions that have been widely implemented for decades. Autism researchers should be deeply troubled by this comprehensive failure to apply fundamental standards. We must recognize, understand, take responsibility for, and reduce the unacceptable biases that have led to autistics being considered unharmable, such that anything can be done to them.

Source: When autism researchers disregard harms: A commentary – Michelle Dawson, Sue Fletcher-Watson, 2021

Autistic people have difficulty accessing safety. Our neurology is tuned to high alert. So it’s especially cruel that we’re subjected to such harm. Autism therapies ignore everything we know about autism. The harm done is immense.

Why is autism research such a harm factory? In large part because private equity and big autism charities distort everything.

This study is the first systematic investigation into COIs in autism early intervention research. We found that COIs exist in a majority of studies, but are widely unreported.

Source: Research Review: Conflicts of Interest (COIs) in autism early intervention research – a meta‐analysis of COI influences on intervention effects

Via Ann Memmott, who breaks it down better than I ever could in this Twitter thread:

This is such an important piece of research by @autismcrisis @SueReviews
I want to put some of its findings on this thread.
How most autism researchers, in the studies here, haven’t even thought about whether they’re damaging the children & young people/

https://journals.sagepub.com/doi/10.1177/13623613211031403

@KristenBott & team investigated this in 150 bits of research. 139 (93%) did not even mention harms as a possibility, 11 (7%) had vague summaries, & none wrote that possible harm was even monitored/

Rodgers & team looked at ABA (applied behavior analysis research. Nowhere in this highly influential literature was there any reported effort to monitor or collect data on possible harm to the children.
None at all.
Nothing./

These poor standards in research has been flagged as a violation of research ethics.
Promotion of “early intensive” interventions (EIBI) when clueless about possible harms, “…has been and continues to be inherently harmful to autistics”/

This is a snip from the paper which talks about the horrifying things done to autistic children and young people, without ever once checking whether it’s actually done harm.
Yes, now, 2021.
Yes, ‘therapies’ paid for with public money.
Goodness me/

In choosing to believe that ‘success’ looks like a silent, still autistic child, the teams gave themselves no chance at all to assess for harm. Or to even realise that such a situation is, or could be, harmful for a child with different neurology & very real needs & emotions/

“Nothing justifies these multiple failures on the part of autism researchers”.

I agree entirely.

Not a career path.
Not a pretty award.
Not cash in the bank.

These are children whose lives have been treated as an cost-free experiment, & the damage could be lifelong.

What I find particularly shocking is that I read so many papers that have the gall to write “Yeah, we complied with Ethics and the Helsinki stuff, honest gov”.
Like hell they did.
Didn’t even think about it from start to finish.

An industry backed by a couple of rogue charity leaders who threaten researchers with, “You’ll never work again unless you do exactly as you’re told”.
Where the end result is whatever the ‘stakeholders’ want delivered (including those profiting from this misery)

“We must recognize, understand, take responsibility for, and reduce the unacceptable biases that have led to autistics being considered unharmable, such that anything can be done to them.”

Amen to that.

Originally tweeted by Ann Memmott PGC🌈 (@AnnMemmott) on July 28, 2021.

Follow the authors of ” When autism researchers disregard harms: A commentary” on Twitter:

Are You Feeding White Supremacist Ideology?

Mainly what happened is that the credibility of science was stolen to bolster rationalizing prior bigotries.

They instead learned that bastardized evolutionary theories could be weaponized to justify all kinds of abuses.

From my perspective, though, the deepest of the rifts was the emerging anti-feminist wing and the active neglect of social justice issues. 

I realized it’s destination was where it is now: a shambles of alt-right memes and dishonest hucksters mangling science to promote racism, sexism, and bloody regressive politics.

The train wreck that was the New Atheism

Useful Research

This is a list of useful research papers and Commissioned documents that have changed how we think about autistic people, and how we respond to their distress and their brain events.

Useful New Autism Info for Care Settings

Autism. Nearly 80 years on from the original misunderstandings in the 1940s.  So, what’s changed, in research?  Almost everything.

Autism: Some Vital Research Links

Autism in Care Settings: Managing Sensory Load

“It’s Not Rocket Science” – NDTi – “Small changes that can easily be made to accommodate autism really do add up and can transform a young person’s experience of being in hospital. It really can make all the difference.”

Considering and meeting the sensory needs of autistic people in housing | Local Government Association – “One of the most important findings is that most autistic people have significant sensory differences, compared to most non-autistic people. Autistic brains take in vast amounts of information from the world…”

Avoiding Anxiety in Autistic Children by Luke Beardon | Waterstones – “I have written elsewhere about what I refer to as ‘the golden equation’ – which is: Autism + environment = outcome. What this means in an anxiety context is that it is the combination of the child and the environment that causes the outcome (anxiety), not ‘just’ being autistic in and of itself.”

Experience of Trauma and PTSD Symptoms in Autistic Adults: Risk of PTSD Development Following DSM‐5 and Non‐DSM‐5 Traumatic Life Events – Rumball – 2020 – Autism Research – Wiley Online Library – “Research to date suggests that individuals with autistic spectrum disorder (ASD) may be at increased risk of developing post-traumatic stress disorder (PTSD) following exposure to traumatic life events. It has been posited that characteristics of ASD may affect perceptions of trauma, with a wider range of life events acting as possible catalysts for PTSD development.”

Just listen. It’s not rocket science, just listen.

Daisy
I get overwhelmed so easily
My anxiety creeps inside of me
Makes it hard to breathe
What's come over me
Feels like I'm somebody else
I get overwhelmed so easily
My anxiety keeps me silent
When I try to speak
What's come over me
Feels like I'm somebody else
I get overwhelmed

All of these faces
Who don't know what space is
And crowds are shut down
I'm overstimulated
Nobody gets it
They say I'm too sensitive
I can't listen cause I'm eyeing the exits

--Overwhelmed by Royal & the Serpent
I get overwhelmed so easily
My anxiety
Creeps inside of me
Makes it hard to breathe
What's come over me?
Feels like I'm somebody else

I get over, well, well, well
Would you look at that?
Another person telling me that I should just relax
"Calm down and take it easy everything will be okay"
Yeah, sure 'cause that's what they all say

--Overwhelmed by Ryan Mack

The Double Empathy Problem

We found neurotypical– neurodivergent encounters manifest this double empathy problem, with practitioners displaying limited capacity for neurodivergent intersubjectivity leading to misempathy and lack of relational depth.

This study has demonstrated a need for less focus on remediation and greater focus on shifting practitioner capacity for humanistic relating.

Practitioner experience of the impact of humanistic methods on autism practice : a preliminary study

The ‘double empathy problem’ refers to the mutual incomprehension that occurs between people of different dispositional outlooks and personal conceptual understandings when attempts are made to communicate meaning.

From finding a voice to being understood: exploring the double empathy problem
  • Cameron (2012) uses the term ‘dyspathy’ to highlight how empathy is often blocked or resisted by people.
  • Cameron (2012) cites a number of recent studies using fMRI scanning claim to demonstrate a bias towards in-group members in ‘automatic’ empathy.
  • Such findings support the earlier social psychological theories of Tajfel (1981), which found that people felt increasing emotional connection to those deemed within their social ‘in-group’, whilst stereotyping ‘outsiders’.

Source: From finding a voice to being understood: exploring the double empathy problem

To be defined as abnormal in society is often conflated with being perceived as ‘pathological’ in some way and to be socially stigmatised, shunned and sanctioned. Then, if there is a breakdown in interaction, or indeed a failed attempt to align toward expressions of meaning, a person who sees their interactions as ‘normal’ and ‘correct’ can denigrate those who act or are perceived as ‘different’ (Tajfeel & Turner, 1979). If one can apply a label on the ‘other’ locating the problem in them, it also resolves the applier of the label’s ‘natural attitude’ of responsibility in their own perceptions and the breach is healed perceptually, but not for the person who has been ‘othered’ (Said, 1978).

A Mismatch of Salience | Pavilion Publishing and Media

Let me put this in no uncertain terms: if you do not understand the Double Empathy problem you have no business writing anything at all about autism for general consumption. This is not because you are a bad person — it’s because you have missed the most important memo in Autism research in decades.

How To Talk About Autism Respectfully: A Field Guide for Journalists, Educators, Doctors and anyone else who wants to know how to better communicate about Autism

And this is where the neurotypical belief in theory of mind becomes a liability. Not just a liability – a disability.

Because not only are neurotypicals just as mind-blind to autistics as autistics are to neurotypicals, this self-centered belief in theory of mind makes it impossible to mutually negotiate an understanding of how perceptions might differ among individuals in order to arrive at a pragmatic representation that accounts for significant differences in the experiences of various individuals. It bars any discussion of opening up a space for autistics to participate in social communication by clarifying and mapping the ways in which their perceptions differ. Rather than recognize that the success rate of the neurotypical divining rod is based on mere statistical likelihood that the thoughts and feelings of neurotypicals will correlate, they declare it an ineffable gift, and use it to valorize their own abilities and pathologize those of autistics.

A belief in theory of mind makes it unnecessary for neurotypicals to engage in real perspective-taking, since they are able, instead, to fall back on projection. Differences that they discover in autistic thinking are dismissed as pathology, not as a failure in the neurotypical’s supposed skill in theory of mind or perspective-taking.

Ironically, constantly confronted with the differences in their own thinking and that of those around them, and needing to function in a world dominated by a different neurotype, autistics are engaged in learning genuine perspective-taking from the cradle on. The perceived failure in that perspective-taking is thus based on the fact that autistics do not rely on and cannot rely on neurological similarities to crib understanding by projecting their own thoughts and feelings onto others.

As such, autistics talk about themselves rather than others, a feature of autistic narrative that has been pathologized as “typically autistic” by researchers like Ute Frith. The fact that much of autistic writing is dedicated to deconstructing neurotypical fallacies about autistic thinking set in the world when they spoke about (or for) us, and to explaining differences in autistic thinking in order to broker mutual understanding remains unremarked upon, as it would have required adequate perspective-taking to have identified this.

Thus, if we were to summarize the effect of neurotypicals sitting in wells that are structured in much the same way, delimited in much the same way, oriented in the same general direction and located in the same geographic location, manifested as an unassailable belief in their natural gift of theory of mind, we would have to conclude that this belief in theory of mind severely impairs neurotypicals’ ability to perceive that there is sky or even the great sea outside the narrow limits of their purview. It also necessarily impacts their cognitive empathy vis-à-vis autistics and, sadly, their affective empathy as well.

This deficit in neurotypicals needs to be remediated if autistics are to have a chance to participate as equals, because the truth is, in this regard, autistics suffer and are excluded from social communication not because of our own disability, but because of neurotypical disability.

The belief in a theory of mind is a disability — Semiotic Spectrumite

Monotropism

Monotropism provides a far more comprehensive explanation for autistic cognition than any of its competitors, so it has been good to see it finally starting to get more recognition among psychologists (as in Sue Fletcher-Watson’s keynote talk at the 2018 Autistica conference). In a nutshell, monotropism is the tendency for our interests to pull us in more strongly than most people. It rests on a model of the mind as an ‘interest system’: we are all interested in many things, and our interests help direct our attention. Different interests are salient at different times. In a monotropic mind, fewer interests tend to be aroused at any time, and they attract more of our processing resources, making it harder to deal with things outside of our current attention tunnel.

Me and Monotropism: A unified theory of autism | The Psychologist

When focused like this an Autistic person can enter a ‘flow state’ which can bring great joy and satisfaction to the person experiencing it.

However it can make switching between tasks and other transitions difficult.

Monotropism

The biggest practical thing to take away from this is the importance of meeting the child, or adult, where they are. This is not an insight unique to the monotropism perspective, but nothing else I’ve seen demonstrates with such clarity why it’s so crucial. Treat interests as something to work with. Recognise what someone’s passionate about and learn how to become part of the attention tunnels which come with monotropic focus, rather than trying to just reach in and pull the person out of the flow states that are so important to us. Never pathologise ‘special interests’, and don’t assume that autistic interests are ‘restricted’  – there are plenty of ways to get us interested in new things, it’s just that they mostly involve taking existing interests and building on them.

Me and Monotropism: A unified theory of autism | The Psychologist

Research-Storytelling

Our website is an act of research-storytelling. Explore.

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Rock N’ Roller by Kyle Duce

Staying alive is a lot of work for a disabled person in an ableist society…

DISABILITY VISIBILITY: FIRST PERSON STORIES FROM THE 21ST CENTURY
This is your time, this is your life and
This is your time, this is your life and
You gotta keep on (Keep on livin!)
Gotta keep on (Keep on livin!)
You gotta keep on (Keep on livin!)

Disability justice (and disability itself) has the potential to fundamentally transform everything we think about quality of life, purpose, work, relationships, belonging.

DISABILITY VISIBILITY: FIRST-PERSON STORIES FROM THE TWENTY-FIRST CENTURY

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We exist as friction. The work that we do; it’s wildly painful.

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As If We Existed

A COMPUTER
CAN NEVER BE HELD ACCOUNTABLE

THEREFORE A COMPUTER MUST NEVER
MAKE A MANAGEMENT DECISION

1979 IBM Presentation

Like gods, these mathematical models were opaque, their workings invisible to all but the highest priests in their domain: mathematicians and computer scientists. Their verdicts, even when wrong or harmful, were beyond dispute or appeal. And they tended to punish the poor and the oppressed in our society, while making the rich richer.

Weapons of Math Destruction: How Big Data Increases Inequality and Threatens Democracy
What's the problem with my genius?
Too attached to ever leave it
Silent for the new achievement but
What I long to witness is the equal shift
Of lifted gadgetry to intuition by
Genius giving up its selfish tact
And bringing praise of spirit back (Hey)
Pay respect upon the debt incurred
By non-belief when soul was speaking
Called simplistic by a name familiar to
Those regulars who think intelligence a competition
Missing opportunity to be a real show embarrassment
The care is not
The care is NOT spewing tools to ax the problem
Rather asking have or how they aptly solve themselves
...
What if love said: Hear me out a bit before the future comes around
...
This isn't anger, no, it's passion so let's live the way we should
As if we existed

"As If We Existed" by Solillaquists of Sound

⛑📚 Our Pillars 🗂🧰

Mutual Aid

Real help against the onslaught. Staying alive is a lot of work for a disabled person in an ableist society.

Learning Space

The place where we belong does not exist. We will build it. Anti-ableist space for passion-based, human-centered learning compatible with neurodiversity and the social model of disability.

Open Research

Digital sociology, neurodiversity studies, disability studies, and syncretism, in the open. Improving science by restoring the humanities.

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Stay relevant in a constantly changing world. Dismantle ableism in your spaces. Enable dignity through access.

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