Two cosmic beings, one bearing a red hue and one bearing a blue hue, share a spark inducing kiss

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

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.

It’s not Science vs Philosophy … It’s Science + Philosophy. When you measure include the measurer.

MC Hammer

But in introducing me simultaneously to skepticism and to wonder, they taught me the two uneasily cohabiting modes of thought that are central to the scientific method.

The Demon-Haunted World: Science as a Candle in the Dark

Science’s eye for detail, buttressed by philosophy’s broad view, makes for a kind of alembic, an antidote to both. This intellectual electrum cuts the cloying taste of idealist and propositional philosophy with the sharp nectar of fact yet softens the edges of a technoscience that has arguably lost both its moral and its epistemological compass, the result in part of its being funded by governments and corporations whose relationship to the search for truth and its open dissemination can be considered problematic at best.

…the passive voice, “objective” stance, anonymity, and depersonalization of the scientist and journalist betray the fundamental phenomenological reality that each of us has a specific perspective. All observations are made from distinct places and times, and in science no less than art or philosophy by particular individuals.

Cosmic Apprentice: Dispatches from the Edges of Science

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.


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

Two cosmic beings, one bearing a red hue and one bearing a blue hue, share a spark inducing kiss
“Tell me the story about how the Sun loved the Moon so much he died every night to let her breathe.”
Art by Heike Blakley

Ideally, in the search for truth, science and philosophy, the impersonal and autobiographical, can “keep each other honest,” in a kind of open circuit.

Cosmic Apprentice: Dispatches from the Edges of Science

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

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
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

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

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
“I want to use respectful language in my research paper about autism”. A thread. As we move firmly past the 20th Century ‘tragedy thinking’ about autism, more researchers are embracing good and positive language around autism. Let’s take a quick tour of some:

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.


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
It’s an example of what we see All The Time. That no-one bothers to ask us. Then they make up an alleged fact. Then their alleged fact makes it into policy. Then they tell us that we don’t know anything, because we’re not like the Children They Did Not Ask. It’s boggling stuff.
As a late diagnosed autistic person, the high volume of peer reviewed research papers that can only be properly described as utter nonsense, has been something of a revelation.

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
Potentially offensiveAutistic preferredInsight and perspectives from the autistic communityExample of preferred language use in research
Autism spectrum disorder (ASD)Autism, autisticDisorder is unnecessarily medicalised and reinforces negative discourses that autism is wrong or needs curing‘Autism is a neurodevelopmental difference…’
Person-first language (person with autism)Identity-first language [autistic (person)]Identity-first language emphasises autism as inseparable from the person and an integral part of their identity, whereas person-first language suggests a separation between autism and the individual‘A total of 125 autistic adults participated in the study.’
Autism symptoms and impairmentsSpecific autistic experiences and characteristicsMedical terminology pathologises the characteristics and experiences of autistic people as deficient and abnormal‘This study recruited autistic participants with a high sensitivity to sensory stimuli.’
At risk of autismMay be autistic; increased likelihood of being autisticDanger-oriented terms (vs. probabilistic terms) imply that autism is a negative (possibly preventable) outcome‘Children with an increased likelihood of being autistic were also included in the study.’
Co-morbidityCo-occurringAutism is not a disease, even though it often co-occurs with other neurodivergences or medical conditions‘Individuals with co-occurring medical conditions were excluded from the study.’
Functioning (e.g., high/low functioning) and severity (e.g., mild/moderate/severe) labelsSpecific support needsAll autistic people have a range of strengths, skills, challenges, and support needs that can vary over time and in different situations and environments‘Individuals with sensory and communication support needs.’
Cure, treatment, or interventionSpecific support or serviceAutism does not need to be cured, treated, or modified. Supports should not be targeted at autism characteristics, although autistic people may benefit from individualised supports‘The participants were receiving occupational therapy to reduce sensory overload in those with high sensory needs.’
Restricted interests and obsessionsSpecialised, focussed, or intense interestsDeficit-based terminology pathologises the interests of autistic people rather than celebrating their knowledge‘The participant had specialised interests in computers and politics.’
Normal personAllistic or non-autisticAllistic is an empowering term that reframes autism and autistic traits as a difference instead of an abnormality‘The comparison group included allistic (non-autistic) people.’
The use of language in autism research – ScienceDirect, Licensed under a Creative Commons CC BY 4.0 license

One of the things about autism research having done so little of real use for so long is that there’s now this whole pile of really upsetting research to get through – before we start getting a lot of really positive results making use of what we’re finding now to really help us.

I wish you could know
What it means to be me
Can you see
You’d agree
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

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

Those with the most power in the field ought to share this burden by challenging the system that creates autistic dehumanization, by challenging the language, the systemic marginalization, by listening to autistic people in research when they say, “this is not okay,” and more than ever, by talking about “objectivity.” This requires engaging in a constant dynamic learning process as society, culture, and our ideas of autism change, to ensure that we do not become static markers of this time or place.

Frontiers | Academic, Activist, or Advocate? Angry, Entangled, and Emerging: A Critical Reflection on Autism Knowledge Production | Psychology

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.


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

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

Give yourself a combo plate (Combo plate)
Transform, transform, everybody transform

If we could transform
We wouldn't have to be afraid
We wouldn't have to be unmade
From this life

If we could transform
And change the way we are right now
It'd be
Much, much, too easy

Can you take those thoughts away?
Can't you see I'm fine?
Warm your heart, don't you see
It's just the same as mine?

Am I naive?

--Transform by Steam Powered Giraffe

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

The growing presence of autistic people in autism research—as participants, advisors, and (co)researchers—has brought about changes in the quality and relevance of autism research. We are seeing more studies by autistic autism researchers, more studies on issues of importance to autistic people, and more studies utilizing methodologies that resonate with autistic people. However, there remains a reliance on measures that are technically ‘‘valid’’ and ‘‘reliable’’ rather than relevant. As long as this is the case, we will continue to see studies published that ‘‘explain autism’’ in ways that do not reflect autistic experiences. Autism research is still making incremental changes and it is time for a paradigm shift.

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

Research into the experiences of autistic people is used to inform policy, practice, and community understanding. It is important that autism research respects and reflects autistic voices. Current research often uses scientific in- struments that are not consistent with our lived experience of autism.

This article explains why the current approach to research—encouraging the use of existing measures and incre- mental change—is harmful to autism research and to autistic people. It provides examples of commonly used tools and explains why they are problematic. The article aims at encouraging a discussion into why the findings of autism research are often inconsistent with the experiences of autistic people.

Academic journals aim at publishing papers that present the best and most accurate research projects. Researchers are encouraged to use tools that have been developed and tested in previous studies, because these are considered to be ‘‘reliable’’ (consistent) and ‘‘valid’’ (accurate). Researchers are discouraged from developing new measures or making major changes to existing ones. So, it can be hard to publish community-driven research that uses tools developed by autistic people.

I recommend that autism researchers ensure that the tools they use to study autism actually measure the experiences of autistic people. I also recommend that we stop relying on existing measures that do not make sense to autistic people and work with autistic people to develop better tools.

These recommendations will help autistic adults by making autism research more relevant and useful. Research that reflects our actual experiences will improve community understanding of autism. It will also lead to better policies and practices that meet the needs and aspirations of autistic people.

Despite numerous calls for the inclusion of autistic people as collaborators and co-researchers, we are still measuring important aspects of autistic lives by using instruments developed by non-autistic people. It is not enough to make minor modifications to existing instruments so that we continue to ‘‘reliably’’ and ‘‘validly’’ measure the wrong things.

We have seen a number of paradigm shifts in the way we understand autism. We now know that autism is not a childhood condition, is not caused by refrigerator mothers, is neurodiversity not disease, and is prevalent (but under- diagnosed) in females.

It is time for a paradigm shift in the way we research autism. Rather than continuing to conduct research by making incremental changes to existing measures that misunderstand and misrepresent autistic people, we need to critically explore the applicability of existing measures and develop new measures that accurately reflect autistic experiences.

If we are to utilize measures developed with 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?

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

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

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.

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

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

The Fundamental Attribution Error is that we overestimate the power of the person and underestimate the power of the situation.

Student Culture and Learning: What’s the Connection?

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!

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.

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

Autistic people are not being well-served by this research, if we’re being served at all.

Autistics: less biased. Researchers?

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?

What on earth has been going on, in experimentation on our autistic loved ones?

Who on earth thought we were no more human than a lump of clay?

Ann Memmott PGC🌈 (They/she) on Twitter

Continue for our questions to an industry, including, “Are you disregarding harm?”