Who Gets To Define Reality?

TL;DR: The DSM didn't discover Autism. It constructed it, inside a eugenicist framework, shaped by capitalism, colonialism, Western psychiatry, and researchers who were literally deciding which children deserved to live. Autistic knowledge production has been fighting that definition ever since, and the Double Empathy Problem names what's actually at stake: there is no singular social reality, there are many, and the one built into the DSM was never built for us.

As someone who has always felt on the outside of social environments, who is AuDHD, neuroqueer, non-binary...It was obvious to me young in my life that the interpretation of behaviours was heavily influenced by personal perception. In the context of Autism research, this leads to voyeuristic interpretations of Autism that categorise the neurotype by rigidity, inflexibility, and deficits in social communications and reciprocity. These interpretations are based on assumptions of social relationality. However, this is not necessarily how Autism develops in an accepting environment; in fact, we don't even have any studies on that, because Western research is obsessed with damage-based research (Tuck, 2009; see TuckHEdR79-3.pdf to read more about damage and desire-based research). We do not take into consideration how the trauma of autistiphobia shapes our understanding of Autism. We do not take into consideration how being told that the way you are experiencing reality is wrong (in both implicit and explicit ways) shapes our interpretation of Autism. (The Autistic person often experiences this as chronic misattunement.)The Autism of the DSM is a traumatised or at the least, highly stressed Autistic person (the DSM is the mental health manual for "officially" diagnosing Autism).

So here we are, needing to prove and argue that people have different ways of communicating and there is no inherent “better” style. (The Prove-it Reflex is systemised externally before it becomes internalised.) Wild times, am I right? But when you live in a binary society based on a superiour/inferiour dichotomy, this is what happens.

Dr. Damian E. Milton wrote his research paper on the Double Empathy Problem in 2012, and we Autistics are still fighting to have our knowledge production recognised, accepted, and validated, 14 years later.

Our social realities are SO taken for granted, that attempting to address the concept of MULTIPLE social realities is something people have a hard time wrapping their heads around....and yes, I'm even talking about "educated" people -- the PhDs, the Drs, the career-researchers...being educated isn't a guarantee that you will be able to see or understand that reality exists in plurality. It requires critical thinking, something that is not emphasised in all higher education programs. Being educated in something simply means you've invested a large amount of resources (time, money, energy, thought, work, spirit) in that something, and you know it extremely well through the lens and orientation within which your program educated you. (They are called "programs" because they program you.)

I was educated in Clinical Social Work through a post-modernist, constructionist, critical thinking, transformational lens that encouraged students to explore any and all transformational frameworks and make their own theory of transformational practise. I chose to study Black Feminist knowledge production and the Indigenous frameworks I reference in this article. My educational experience programmed me to make space for plurality, be clear on my values, think critically, and see therapy as one part of a larger whole. A strand in the web of life, if you will. Wrapping my head around plurality makes sense to me, both in the context of my education and my personal experience as an "outsider" in white culture (neuroqueer, AuDHD, Bi, non-binary).

Autism Was Always a Political Diagnosis

History of Autism as a Diagnosis of Disorder

Autism was pathologised and put into the DSM in 1952 as “childhood schizophrenia” (Iannelli, 2020). As time went on, this was revised and updated to current-day DSM-V classification as “Autism Spectrum Disorder” on a range from “mild” to “severe” (Zeldovich, 2018). Due to being studied by non-Autistic researchers sharing a great amount of sameness and very little difference from the dominant power structure at the time, Autism has always been viewed as abnormal (Walker, 2016). It was never considered that Autistic children could have a separate timeline for neurological development, distinct and different from non-autistic neurological development.

Here is the timeline of Autism. First entry into the DSM as childhood schizophrenia, then infantile autism in 1980, then revised in 1987 to remove the onset before 30 mos criteria. The DSM-IV was the first to categories Autism as a spectrum, as 5 conditions with distinct features, ranging from Asperger’s to Childhood developmental disorder. The DSM-V took those conditions and combined them into one diagnosis: ASD, and then rated it from mild to severe.

Timeline:

Which brings us to the DSM-V revision in April of 2022. This revision completely ignored the decades-long advocacy of the Autistic community. The needs and struggles of Autistic gender, ethnic, and racial minorities became even more invisible to the DSM. For example, when you are part of a marginalised community, you are explicitly and implicitly taught the consequences of not fitting it. This trauma masks the struggles one has endured. Furthermore, continuous hyper-fixation by the neuromajority on socio-emotional “deficits” ignores decades of Autistic advocacy and research on the Double Empathy Theory. This was described in the 90s by Jim Sinclair, and named in research by Damian Milton in a 2012 paper.

To understand why the DSM functions the way it does, and why Autistic advocacy has struggled to change it, we need to look at the broader medical framework it lives inside and the epistemological assumptions (meaning assumptions about which forms of knowledge are valid) that framework takes for granted.

The System Was Never Built for Us

Western Medicine and Mental Health

There are many ways to conceptualise and understand mental health. For example, Indigenous healing philosophies of mental health often operate from a place of wellness (Linklater, 2006) and are “focused on restoring balance to the self through relationship with others and the environment” (Stewart, 2008). This is in stark contrast to Western perspectives that operate from a place of illness (Linklater, 2006). These diverging perspectives conceptualise the person seeking care and the healing process in radically different ways (Linklater, 2006). Psychiatry is centered around the mind and behaviour and treats the mind and body as separate entities (Letendre, 2002). In the mental health field, “other explanations of the reality of mental distress are effectively marginalised in favor of a psychiatric diagnosis” (Crowe, 2000). For it is only through psychiatric diagnosis that needs and supports can be validated and provided in US culture.

Psychiatric discourse shapes belief about mental health and mental disorders. The DSM-V believes that “distinct psychiatric diseases or clinical entities exist, are known, and are there to be recognized by the discerning clinician or researcher” (Jacobs, 2009). Clearly the impact of personal biases was not considered, as these “distinct psychiatric diseases” are based on subjective judgments. Through the definition of mental disorder and subsequent categorisation, the DSM-V utilises language to shape discourse and public belief on normativity and ascribe “privileged meaning for particular signs which are interpreted as symptoms” (Crowe, 2000). The function of the DSM-V is that it “reinforces a normative expectation that individuals function productively within society” (Crowe, 2000). In the USA, productively functioning is determined by contributing to the economic wealth of the society (Crowe, 2000), and the inability to do this is considered a mental disorder.

In 1980, psychiatry aligned itself with conventional allopathic medicine and began its current legacy of pathologising “abnormal” lived experiences as mental health disorders (Jacobs, 2009). This incorporation of the Psychiatry and the DSM into Western medicine was supported by the move to neoliberalism in the 1980s as Ronald Reagan was elected president in the United States and Margaret Thatcher Prime Minister in the United Kingdom (Evans, 2018). This shift has created a flowing and synergistic relationship between maintaining current systems of domination as well as legitimising Psychiatry as a profession.

How 'Normal' Was Invented to Sort People

The history of Autism from a social context

Prior to the turn of the 20th century, society had been more integrated for Autistic people. The end of the 19th century saw many transitions; most impactful among those were the end of Enslavement and the Industrial Revolution. The combination of these ushered in a corporation-dominated age of capitalism that continues to exist (Singer, 1998). With the new demands of speed, efficiency, and constant productivity, Autism became a disorder because these were demands that many Autists could not meet (Singer, 1998).

Around the same time, the idea of “normal” was being established and reinforced by selective interpretation of statistics as a way to quantify and generalise human experiences (Singer, 1998). Adolphe Quetelet generated the idea of averaging human features (eg., weight, height) to come up with the concept of the “average man” which then was applied to human behaviour in the form of a “moral average:” a convenient “empirical” justification in establishing a normal way of being human (i.e., neuronormativity) (Singer, 1998).

Davis (1995) put it best when he stated that The Norm is “a part of a notion of progress, of industrialisation, and of ideological consolidation of the power of the bourgeoisie.” Davis (1995) also points out that the concept of the norm provided the foundation for oppressive systems to grow, stating “there is a real connection between figuring the statistical measure of humans, and then hoping to improve humans so that deviations from the norm diminish.” Worthy of noting was that all the major early statisticians were also Eugenicists (Davis, 1995).

This is the world Autism was named inside. A world already committed to sorting human beings into productive and unproductive, fit and unfit, normal and deviant. Which leads to the next segment -- the men who did that naming and the culture and geo-political landscape that shaped their knowledge production.

The Men Who Named Autism

The framework and system that Autism gets diagnosed in was built by people deciding which children were worth saving from extermination. I would argue that this is where the Pathology Paradigm began -- the seeds from Nazi Germany traveled to the USA to take root. People may die, but their ideas survive and live on.

Let me explain...

Autism’s beginnings is attributed to Leo Kanner, who first described it as “infantile Autism” and did a great deal of harm in his conceptualisation (Evans, 2018). Decades later, in 1981 psychiatrist Lorna Wing published a paper in Psychological Medicine that brought Asperger’s work to the English-speaking medical community and she called it Asperger’s Syndrome (Baron-Cohen, 2018). Hans Asperger was a physician working during Nazi Germany, and he had been doing research on the same population and made different conclusions and conceptualisations about Autism (Baron-Cohen, 2018). There is speculation that Kanner was either influenced by or plagiarised Asperger’s ideas, as Kanner ended up working with people who had previously worked with Asperger (Baron-Cohen, 2015).

Asperger’s research has a dark history (as, unfortunately, most Western methods of research do). During Hitler’s regime, psychiatry and other healthcare professions became centered around eugenics – with the objective to classify the population of Germany and its expanding reach as genetically “fit” or “unfit.” (Baron-Cohen, 2018). Those who were deemed unfit were sent to euthanasia killing programs, and psychiatrists and other physicians were the authourity figures who made those decisions (Baron-Cohen, 2018). Asperger was one of these physicians, and was one of the first physicians to document traits of Autism in young male children (Baron-Cohen, 2018). He called it “autistic psychopathy” and it was what would later be put in the DSM at Asperger’s Syndrome, and then later incorporated into the Autism Spectrum (Baron-Cohen, 2018).

Asperger referred what we now call high-support needs Autistic children to clinics that were “child euthanasia” centers (Sheffer, 2018). There was a lot of speculation as to the degree of Asperger’s complicity, including previous narratives that he didn’t know or he was trying to save children, but research by Edith Sheffer uncovered evidence from medical records and referral letters that clearly dispelled any notion of him being ignorant or saving children (Sheffer, 2018). The only children he protected were the ones he judged as intelligent. Through her research covering medical records of that era, Sheffer argues that Asperger supported the Nazi goal of eradicating children who could not socially conform to the fascist ideal of a homogenous Aryan people (Baron-Cohen, 2018; Sheffer, 2018). Sheffer cites a referral letter Asperger sent for child Elisabeth Schreiber to Am Spiegelgrund (the child euthanasia center) with Asperger’s reasoning being “in the family, the child is without a doubt a hardly bearable burden”(Baron-Cohen, 2018; Sheffer 2018a). This research by Sheffer was confirmed by medical historian Herwig Czech (Czech, 2018).

It is fact that Asperger participated in team assessments that evaluated disabled children for worthiness of life, and those deemed unworthy were sent to Am Spiegelgrund, where hundreds of children were killed under eugenicist Nazi policy, with cause of death recorded as “pneumonia” (Baron-Cohen, 2018; Sheffer, 2018).

What I find interesting, is Edith Sheffer’s assessment:

“It came down to one’s label. The Third Reich was a diagnosis regime, obsessed with sorting the population into categories, cataloging people by race, religion, politics, sexuality, criminality and purported biological, mental and behavioral defects” (Sheffer, 2018a).

It doesn’t take a rocket scientist to see the parallel to modern day USA. Just substitute “The Third Reich” for “The USA” and the passage is just as accurate. But that is an article for another day.

The Double Empathy Problem

Using his precise, compact definitions, Milton describes this plurality of reality less personally and more structurally:

“Such cognitive-behavioural discourses abstain from acknowledging the universal issue of relationality and interaction in the formation of a contested and constantly reconstructed social reality, produced through the agency of its ‘actors'” (Milton, 2012).

This is such an important part right here. The term “Double Empathy Problem” was created to acknowledge and make visible the contestation of realities. To name the truth that social realities and truths exist in plurality, not in absolutes.

In simpler terms, Dr. Milton is stating that the way we decide to put our reality together (society, culture, accepted and unaccepted behaviours) strongly affects our perception. He is speaking to social constructionism and Black feminism here. Black feminism and social constructionism both state that people come together to construct reality, and both discuss the role of power and perception in this process. In the USA, our reality has not been constructed in collaboration; it has been constructed in dominance and control, by a small group of people with significantly more resources than the rest of the country (with the aim to keep it that way and keep the rest of us stuck in scarcity mode). People who have been the most exploited and marginalised have always seen this, as they had no other option; Black and Indigenous women, trans folks, and femmes have been teaching and communicating this very thing for centuries, and only in recent times have people with more privilege began to become aware (men and white-bodied folks) and build off this pre-existing knowledge (not usually with the acknowledgement and recognition deserving of these epistemologies).

So this quote here acknowledges the allistic (simply means non-autistic) reality that shapes neuronormative expectations, the Autistic reality, and how they are at odds. A key word in this quote is “agency.” The USA is a settler colonial society and therefore based on many different “isms” (oppression) that aim to restrict and limit agency within its citizens. In this truth of our society, it is revealed that favour and dominance is granted to the agency of allistic actors; but when we refuse to engage in this binary expression of power and choose to exert our agency as a person (as a strand in the web of life), we Autists break free of the imposed restrictions. We do not have to simply accept the social reality given to us. We can accept that it exists without letting it define us or determine our fates. Social realities are extraordinarily fickle, changeable, and malleable.

(Fun fact… academic Autists and Autistic knowledge production refer to Autism as an ontology, which means a way of being. Mainstream researchers and medical professionals look at Autism as a neurological disorder.)

Defining Ourselves Before They Do It For Us

Self-Definition and Self-Determination

Self-definition and self-determination have been seen as integral to social justice by Black feminist knowledge production for centuries. Audre Lorde (2007a) speaks directly to this, when she wrote “it is axiomatic that if we do not define ourselves for ourselves, we will be defined by others -- for their use and to our detriment.” In the context of this passage she was referring specifically the experience of Black women. However, if we employ intersectionality as a way to “think about sameness and difference and its relation to power” (Collins, 2019) it is clear that defining others is a systematic pattern of domination to marginalise lived experiences diverging from the status quo (and thereby sustain current commodified power structures) and perpetuate the “logic of segregation that underlies Western knowledge” (Collins, 2019).

Though it is beyond the scope of this article, that “logic of segregation” is an intentional anti-Indigenous foundation that Western knowledge is built upon. A shared epistemological principle of many Indigenous cultures is the interrelatedness of the world (Archibald, 2019), which is a powerful threat to those who wish to control others. If you see yourself in others, you are challenging to control. By denying the interrelation that exists in this world and universe, the Founding Colonisers were able to shape a discourse of power in binary oppositionals (e.g., “us vs them”). The Founding Colonisers recognised that Power was “created in social interactions” (Fook, 2015) and used that Power to shape a scarcity discourse. This is what we know as the Modernist view of power; a finite commodity that operates like a math equation: if we give power to one group of people, then that means we take it from another (Fook, 2015).

That Autism has been defined voyeuristically through deficit-based discourse, demonstrates the interrelation of power, language, and knowledge, and the synergistic relationship of all three; especially when it comes to identity creation. Autism is not measurable, relies on subjective observation, and the field of Psychiatry and Psychology claim to be the only discipline with the necessary knowledge to determine if someone is Autistic. This reflects the process of promoting particular social actions (gatekeeping Autistic identity) and “the knowledge that supports them as factual and true” (Fook, 2015). In this practise, “alternative perspectives are often suppressed or denied” (Fook, 2015) and certainly this can be seen in the continued suppression of the Neurodiversity Paradigm by Psychiatry.

Common themes of what it means to be Autistic, as described by Autists, include specific sensory needs, interoceptive and proprioceptive struggles, monotropic focus, thinking differently, systematising, non-conformity, struggling to understand subtext and implicit communications, and not understanding taken-for-granted social interactions (Walker, 2016; Price, 2022). This is in stark contrast to the “repetitive behaviours,” “restricted interest­s,” and “insistence of sameness,” that the DSM-V lists, and many Autists have argued that the DSM-V definition is based on Autistic pain and trauma, rather than Autistic joy (Price, 2022). Indeed, this is in alignment with the trauma-based fascination by Western knowledge systems (Tuck & Yang, 2014).

Community and Resistance

“Ideas of experience and community have been fundamental to Black feminist praxis, and Black feminist thought provides important perspective on how these ideas work within resistant knowledge projects” (Collins, 2019). It is my stance that to be a therapist social worker truly in alignment with transformative work and collective care, social workers must embody resistance. This is how I practise therapy and healing work. Resistance is the praxis of any critical theory (Collins, 2019) or truly liberatory therapy, yet this oft becomes divorced from both social work education and clinical work (therapy) and lost. As Collins (2019) goes on to write, “theorising resistance has been essential to the knowledge projects of oppressed peoples.” Community is an important site for both resisting and supporting self-determination (Collins, 2019). The Autistic community started to get its footing and recognise itself as a community in the 1990s with the works of Judy Singer and Jim Sinclair (Pripas-Kapit, 2020), and now there are prominent and influential voices at play (like RFK and other politicians) undermining the progress in social justice we've made as an Autistic community. Perhaps more damaging than political interference is when credentialed researchers like Uta Frith, whose work has shaped the field (and is not Autistic), actively dismiss Autistic knowledge production and community advocacy (Frith, 2026). Regardless, the antidote will always be resistance and community -- two sides of the same coin.

If you're a neurodivergent, questioning, or Autistic adult who's spent years wondering what's wrong with you, and you're ready to ask a different question, I work with people exactly like you. You can find out more about working with me here.

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Sources

Archibald, J., Xiiem, Q. Q., Nicol, C., & Yovanovich, J. (2019). Transformative Education for Aboriginal Mathematics Learning: Indigenous Storywork as Methodology. In J. Archibald, Q. Q. Xiiem, J. B. J. Lee-Morgan, & J. De Santolo (Eds.), Decolonizing Research: Indigenous storywork as methodology (pp. 72–88). essay, Zed Books.

Baron-Cohen, S. (2018, April 19). The truth about Hans Asperger's Nazi collusion. Scientific American. https://www.scientificamerican.com/article/the-truth-about-hans-aspergers-nazi-collusion/

Baron-Cohen, S. (2015). Leo Kanner, Hans Asperger, and the discovery of autism. The Lancet, 386(10001), 1329-1330. https://doi.org/10.1016/S0140-6736(15)00337-2

Collins, P. H. (2019). Intersectionality as critical social theory. Duke University Press.

Crowe, M. (2000). An analysis of the sociopolitical context of mental health nursing practice. Australian and New Zealand Journal of Mental Health Nursing, 6(2), 59–65. https://doi.org/https://pubmed.ncbi.nlm.nih.gov/9256654/

Czech, H. Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna.Molecular Autism9, 29 (2018). https://doi.org/10.1186/s13229-018-0208-6

Davis, L. J. (1995). Enforcing normalcy: Disability, deafness, and the body. Verso

Evans, B. (2018). The intriguing history of the autism diagnosis: Aeon Essays. Aeon. Retrieved October 21, 2022, from https://aeon.co/essays/the-intriguing-history-of-the-autism-diagnosis

Fook, J. (2015). Critical social work practice. in International Encyclopedia of the Social & Behavioral Sciences. Elsevier.

Frith, U. (2026, March). Uta Frith interview: Autism is not a spectrum. Times Educational Supplement. https://www.tes.com/magazine/teaching-learning/general/uta-frith-interview-autism-not-spectrum

Jacobs, D. H. (2009). Is a correct psychiatric diagnosis possible? major depressive disorder as a case in point. Ethical Human Psychology and Psychiatry, 11(2), 83–96. https://doi.org/10.1891/1559-4343.11.2.83

Iannelli, V. (2020, November). The history and timeline of autism. Verywell Health. Retrieved April 14, 2022, from https://www.verywellhealth.com/autism-timeline-2633213

Letendre, A. (2002). “Aboriginal traditional medicine: where does it fit?” Crossing Boundaries-An Interdisciplinary Journal 1,2: 78-87.

Lewis, A. E. (2004). “What group?” studying whites and whiteness in the era of “color-blindness.” Sociological Theory, 22(4), 623–646. https://doi.org/10.1111/j.0735-2751.2004.00237.

Linklater, R. (2016). Decolonizing trauma work: Indigenous stories and Strategies. Langara College.

Lorde, A. (2007a). Scratching the Surface: Some Notes on Barriers to Women and Loving. In Sister Outsider (pp. 45–52). essay, Ten Speed Press.

Lorde, A. (2007b). The Transformation of Silence into Language and Action. In Sister Outsider (pp. 40-44). essay, Ten Speed Press.

Lorde, A. (2007d). The Master’s Tools Will Never Dismantle the Master’s House. In Sister Outsider (pp. 110-113). essay, Ten Speed Press.

Lorde, A. (2007e). Poetry is Not a Luxury. In Sister Outsider (pp. 110-113). essay, Ten Speed Press.

Milton, Damian (2012) On the ontological status of autism: the ‘double empathy problem’, Disability & Society, 27:6, 883-887, DOI: 10.1080/09687599.2012.710008

Price, D. (2022). Unmasking autism: Discovering the new faces of Neurodiversity. Harmony Books.

Pripas-Kapit, S. (2020). Historicizing Jim Sinclair’s “Don’t Mourn for Us”: A Cultural and Intellectual History of Neurodiversity’s First Manifesto. In S. K. Kapp (Ed.), Autistic community and the Neurodiversity Movement (pp. 23–39). essay, Springer Singapore.

Sheffer, E. (2018, April 9). The dark history behind Asperger's syndrome. Time. https://time.com/5255779/asperger-syndrome-nazi-germany-history/

Sheffer, E. (2018a). Asperger's children: The origins of autism in Nazi Vienna. W. W. Norton and Company.

Singer, J. (1998). Odd People In: The Birth of Community Amongst People on the "Autistic Spectrum" (thesis).

Stewart, S. L. (2008). Promoting Indigenous Mental Health: Cultural Perspectives on Healing from native counsellors in Canada. International Journal of Health Promotion and Education, 46(2), 49–56. https://doi.org/10.1080/14635240.2008.10708129

Tuck, E. (2009). Suspending damage: A letter to communities. Harvard Educational Review, 79(3), 409–427

Tuck, E., & Yang, K. W. (2014). R-words: Refusing research. Humanizing Research: Decolonizing Qualitative Inquiry with Youth and Communities, 223–248. https://doi.org/10.4135/9781544329611.n12

Walker, N. (2016). Autism & the pathology paradigm. Neuroqueer. Retrieved February 25, 2022, from https://neuroqueer.com/autism-and-the-pathology-paradigm/

Zeldovich, L. (2018, May 9). The evolution of 'autism' as a diagnosis, explained. Spectrum News. Retrieved April 14, 2022, from https://www.spectrumnews.org/news/evolution-autism-diagnosis-explained/.